And in January, We Got Married

We thought we’d just do it in the courthouse. Something simple, short, sweet. Quick and cheap. I was 28 and Alvaro was almost 30, and we had lots of other things we needed to spend our money on: a car for him, then a car for me, the ridiculous checks we had to write for his immigration process, rent and daily living, my student loans.

My mother disagreed and talked me into a real wedding. I was surprised at my parents’ offer to pay for it; until they brought it up, it hadn’t crossed my mind that creating an event for us was something they would want to do. In my family, once my brother and I got jobs at 14, we took care of most of our purchases ourselves, whether they were big matters like buying cars and paying for insurance, or smaller things like toiletries, clothes and shoes. That independence was something I welcomed and has served me well ever since.

It also made me incredibly practical, and although his fairly privileged background was different from mine, Alvaro meets me when it comes to pragmatism. Neither of us likes to be the center of attention; we don’t see ourselves as cause for a fuss, and we can’t think of anything worse than being surprised by a surprise party. We didn’t even consider a bigger celebration of our marriage before my parents brought it up.

The first purchase was my wedding dress. I found one I liked and ordered it a little too big so that it could be fitted. I remember going to the seamstress’s house with my mom to pick it up when it was finished and trying it on. Alone in her basement before the floor-length mirror, I was stunned by how good I felt in that dress as I smoothed down the skirt, loving the soft swishing sound it made, this dress that my mother bought for me, the dress I would wear to my wedding. My wedding. The tears came on suddenly, and I had to double over so they wouldn’t fall on the dress before pulling myself together and calling my mom in, where, when meeting her eyes, they came back. I used to say I’d never get married when I was younger, not because I didn’t think I’d have fulfilling relationships, but because I couldn’t imagine being with someone and saying forever. And then it happened, and there I was staring at myself in a mirror wearing a white wedding dress.

Alvaro’s parents came from Chile for the event, and I met his mother for the first time. Some of my aunts and uncles came from the East Coast. My grandmother came from Rhode Island. The night before the wedding, I hosted a party for people who had come from out of town at our apartment; a formal rehearsal dinner seemed like too much of an extravagance, but what was I thinking putting a party together the day before getting married? I miss the energy I had then. I knew my grandmother would see that Alvaro and I had been living together before our wedding, and I was nervous about it. She is from Ireland, which makes for an incredibly devout kind of Catholic, and I didn’t want her to worry for my soul. When we had a moment alone together, she shocked me by saying, “I think it’s great that you’ve had a chance to live together first. Now you know exactly what you’re getting. More people should do that.” I was speechless. To know Josephine Joy is to understand that she is the very last person you’d expect to hear that from, and it still makes me smile to remember it. Years later on the phone, when she asked if we were planning to have children, I told her no, that we didn’t want that for ourselves, bracing for the usual responses we’d gotten from other family members: Oh, you don’t know that for sure. Your feelings will change. Even if you don’t think you want children, you will regret it someday. But my grandma surprised me once more by saying that she thought it was wonderful that women have a choice “about these things” today, that they don’t feel forced into becoming mothers. And I’ve wondered since about a life where she would have been able to make her own choices, what that might have looked like for her.

I spent the night before at my parents’ house, leaving Alvaro alone in the apartment. The next day was a flurry of activity: getting our hair done, getting to the venue (an Italian restaurant for an all-in-one ceremony and reception), getting made up and dressed. My father was put in charge of Alvaro, who had spent his morning panicking, buying a bottle of Johnnie Walker Black and a flask for the road. He was confident about making our commitment, but he was incredibly anxious about doing it in front of a room full of people. He’d already had a few shots by the time my dad picked him up. Alvaro isn’t much of a drinker now and wasn’t much of a drinker then, so downing something as strong as whisky wasn’t the best idea he’d ever had. My grandmother was sitting in the back of the vehicle as Alvaro laughed nervously and mimed smoking pot to my father to indicate how anxious he was, flashing the flask tucked away inside his jacket. This seems like a good place to share that Alvaro has never done drugs of any kind, has never even smoked a cigarette, but my poor dad began to worry immediately about whether he was going to make it.

Alvaro greeted guests as they arrived, and my dearest friend remembers him showing her his empty flask and laughing about how much whisky he’d had to drink. Prone to maniacal laughter when he’s anxious, I’m glad I didn’t see him until my dad walked me up the aisle, or I might have had second thoughts about whether his state was an indication of things to come.

There we were, in front of family and friends, committing to each other. It’s cliché, of course, but we had no idea what was ahead of us, just that we’d be facing it side by side. I knew that, anyway. Alvaro, with his glassy eyes and stupid smile, was just trying to get through the ceremony, the whisky doing a fair but incomplete job of calming his anxiety. In the 12 years since, we have adopted two dogs, moved from an apartment we loved in a historic building to our cookie-cutter suburban house, been through several job changes for him, the citizenship process, and then my MS diagnosis, the greatest challenge we’ve had to face so far. There will be more heartbreak in the years to come, of course, but that’s the beautiful thing about partnership: finding a way through it together.

That bottle of Johnnie Walker has been with us since our wedding, taken out of the liquor cabinet once in a while for a drink with guests. When I was making butterscotch ice cream this summer, I reached for it and realized it was almost gone. I bought a new bottle and put the other one aside for this anniversary: it had been aged for 12 years when Alvaro bought it, and now we’re celebrating 12 years since. I’ve made chocolate mousse to celebrate with tonight, and we’ll each have a drink from the end of that bottle, making a small toast to his having gotten through the wedding day and all that we weathered in the years that followed. Our hope for the future is still bright, though it’s certainly better grounded by the work we’ve put in, and memories of my parents’ gift to us—hazy as they may be for Alvaro—are held dearly. Cheers, friends!

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New Year, New Goal

I’m doing something this year that I haven’t done before: I’m actually making a new year’s resolution. In 2020, I’m going to write letters to anyone and everyone who can effect change in the healthcare system, asking them to take concrete action to stop insurance companies from overriding doctors’ prescribed treatments by requiring patients to start on less effective treatments first. Insurance companies are allowed to do this under the guise of caring for patients’ safety, their position being that we don’t know that the lesser medications won’t work until patients fail on them.

Such policies are referred to as “step therapy” or “escalation therapy.” What they have in common is that patients start with the cheapest/least effective therapies and then get to step up or escalate only when medications fail them. In MS, this means evidence of disease progression, whether it is marked through relapse or MRI. Because we don’t yet have remyelinating treatments available, each failure represents permanent brain and spinal cord damage. How is that acceptable?

I’ve written about this before. My doctor and I chose Ocrevus as my first therapy because how aggressive the onset of MS was for me, how active it was in causing relapses and damage. My insurance company denied coverage because its policy requires patients to try and fail on two lesser medications first, specifying the injection and pill options for treating the disease. Many of these treatments were created 20-30 years ago, and while they were better than nothing at the time, we’ve had such advancements in MS treatments since then, especially with infusion therapies. Why should we have to fail on medications that we know are less effective before we can access the most effective ones? Or, if we’re going to start with outdated treatments, why not have us begin with leeches?

These policies do not come from a place of looking out for the patients. Insurance companies don’t care about patient wellness; they only care about enforcing policies that support greater profit margins now, even if there will be greater patient costs in the long term. And it doesn’t just affect big decisions about expensive treatments. For example, my insurance company will have to pay thousands of dollars to treat shingles if I contract it, and I’m more likely to because of my weakened immune system, but they refused to pay for the Shingrix vaccine because I wasn’t 50. My appeals were ignored, so I had to pay for it myself to at least have some protection before starting Ocrevus.

Imagine being diagnosed with a form of cancer. There is a treatment available that offers a very good chance of remission, but before you can try it, you need to start with one that is only 50% effective, and when your cancer gets demonstrably worse, you can access the one that is 65% effective, and when your cancer gets demonstrably worse again, you can access the one that is 80% effective, and when your cancer gets even worse, you can finally access the most effective treatment. By that point, you are unlikely to have outcomes as positive as you would have if you’d had access to it early on. This is what people with MS are asked to do. And because there is no cure for MS, treatments can only slow disease progression, so failure is practically guaranteed.

Patients should have the right to receive the most efficacious therapy/medication right away. They should not have to “fail first” on one or more medications, causing irreversible damage to their health. Step therapy policies are barriers to accessing quality healthcare. By allowing insurance companies to get away with ever-increasing step therapy protocols that only look out for their profit margins (which are in the BILLIONS for all major health insurers each year), governments are allowing them to harm their patients. Further, the insurance companies have no incentive to negotiate for lower prices with drug manufacturers for the most effective therapies unless they are legally required to cover those therapies.

I will be suggesting that representatives support a policy that prohibits insurance companies from creating/enforcing step therapy policies for people with chronic health conditions. Specifically, with a physician’s prescription, insurance companies should have to cover FDA-approved treatments for patients immediately; the company may check with the physician to see if step therapy is appropriate but cannot be allowed to override the physician’s prescription.

Or, if step therapy is not something the representative is willing to work against, I will encourage support for policies that limit how such protocols can keep patients from FDA-approved treatments prescribed by their physicians:

  1. Instead of the current model where doctors and patients must appeal the insurance company’s outdated policies, when step therapy protocols are in place, the burden should be placed on the insurance company to prove that the prescribed treatment will cause harm, be ineffective or that there is a better treatment available.
  2. If a patient has been stable on an FDA-approved treatment for two years and his/her physician recommends staying on that treatment, then the insurance company must cover it after that, overriding any step therapy protocols they have in place. This means that patients could find another way to pay for treatment themselves at first, but the insurance company cannot keep denying them after two years. It would also help differentiate between chronic health conditions like MS and acute health conditions where step therapy may be appropriate.
  3. Prohibit insurance companies from denying coverage for FDA-approved treatments if there is no generic equivalent. Equivalency is important because insurance companies currently are allowed to require alternative medications that are not equal to patented ones.

I understand how massive this mountain is. I know that significant changes to step therapy protocols are unlikely, especially given the power of the health insurance industry. But I also know that complacency reinforces policies like this as “just the way things are done,” and I refuse to be complacent about it in the year to come.

Wishing you all a happy, healthy 2020.

Infection Abjection

Panic took over as I sat in my PCP’s office yesterday waiting for a blood draw.

M had just told me that I would be heading to the hospital for an indeterminate stay if my white blood cell count was above the acceptable range. Hospitals aren’t as scary for me now as they were before MS forced me to spend more time in them, but I haven’t had to stay in one, and the thought of spending Christmas there had me contemplating sneaking out and beginning a life on the run. They do have my address, after all.

My C. diff recovery had been on the decline for the previous few days, the old symptoms slowly coming back. I’d been feverish each evening, more enervated than usual. It didn’t feel like I was getting better anymore, especially at 3 a.m. Friday in the bathroom, when I made an appointment to see M later that morning.

We talked about my symptoms, the fact that I’d never quite gone back to normal after the last round of C. diff.

After my blood was taken, the lab went to work immediately on processing it. I tried to distract myself with Facebook, but my eyes kept turning toward the door, my ears listening for any sound that might be M approaching. I forced myself not to think too much about the logistics of a hospital stay: how I’d get the things I needed, what I’d do about teaching classes on Monday, what we’d do with all the food bought for our Christmas Eve gathering on Tuesday, how much I’d miss my dogs. And Alvaro, I guess.

M returned looking concerned, but it was more about the complicated prescription she had to write than the lab results, which were fortunately fine. I’m back on vancomycin, but this time for a month, tapering down each week, 89 pills instead of the 40 I did last time. I have to be optimistic that this will finally return me to normal because I have to be infection-free in February to get my next round of Ocrevus, and the options for C. diff beyond this involve a very expensive drug of last resort or a fecal transplant, which is just as horrifying as it sounds. So I’m going to believe.

This morning, I woke up in my own bed, and it has never felt so good. My revised Christmas wish is simply to enjoy the holiday and time with my family. Given the alternative one I would have had in the hospital, I’m sure I will, grateful for all that’s going right in a period of what will hopefully be soon-to-be-forgotten upheaval. Meanwhile, I’m sending wishes for happy, healthy holidays to all of you.

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What more than $2,000 of antibiotics looks like

 

Comeuppance

Remember in my last post how I was celebrating medical management being behind me?

Ha, ha, ha. Of course, it wasn’t.

I was put on the antibiotic cefdinir for the sinus infection my neurologist spotted on my MRI. I was fine for a couple of days but then started having gastrointestinal issues that got progressively worse. I lived in the bathroom, completely lost my appetite, and felt like I’d been run over by a truck. Bladder and bowel issues are common in people with MS, and I worried I was crossing over that line, that a relapse was possibly looming. I managed (barely!) to get Thanksgiving together but didn’t enjoy the day like I thought I would because I was so miserable. There were lovely moments, though: a chilly walk to see the geese with my niece in the morning followed by donuts and coffee, the joy of my dogs to receive the giblets my father painstakingly makes into a pate for them, much laughter. Fortunately, those moments were captured in pictures, and they’re what I’ll remember.

By dinner time, I was not doing well. I was overheated, tingling all over, exhausted, edgy. After my family left—my parents with especially concerned looks on their faces—I collapsed on the couch and began to cry. I was sure MS was to blame.  “Maybe this is too much for me to do now,” I said to Alvaro, who agreed and, as he looked at all of the dishes waiting to be washed, decided that holidays should be canceled forever. I maybe cried a little harder after that, especially since Thanksgiving is my favorite celebration of the year. When I pulled myself together, I took my night dose of cefdinir, setting the bottle on the table. A moment later, I picked it back up. Could the antibiotic be causing my problems?

Yes, yes it could. I read horrifying reviews about cefdinir online that perfectly described the symptoms I was having. It was a relief, really, to see them and know MS wasn’t the cause, just that all my symptoms had been triggered by the medication. I stopped taking the antibiotic, but with the holiday weekend and my PCP out of the office, I could only hope that things would get better.

They didn’t. In fact, they got worse. I was scheduled to return to teaching the Monday after Thanksgiving, and I knew I couldn’t do it feeling like I did, so I finally gave up and went to the ER on Sunday. I was worried that I had Clostridium difficile, a life-threatening superbug that can be caused by certain antibiotics, especially cephalosporins like cefdinir. Usually called C. diff, the large intestine infection is responsible for 29,000 deaths per year in the U.S., meaning that more than five percent of people who contract it die within a month of diagnosis.

I wasn’t exactly having an emergency, but I also knew an urgent care facility wouldn’t be able to test for C. diff, so I waited to be seen by the ER doctor. He understood my concerns, especially because of my already-weakened immune system from MS treatment, but given the number of Google-trained experts he probably sees in a shift, he doubted I had C. diff. I hoped he was right and stayed for testing and to receive fluids. The stool testing takes a day or two, so I was sent home.

I made it through my first class on Monday, which was an incredibly welcome small miracle. I was beginning to feel better, though still drained of energy. And then before my second class, an ER nurse called to let me know that I did indeed have C. diff, and I needed to start taking a nuclear antibiotic, vancomycin, if my insurance would approve it; she was almost convinced I would be denied. Vancomycin costs about $1,000, and amazingly, my insurance company wasn’t awful for once and covered it. I hit my $4,350 out-of-pocket maximum for the year before that, but if I hadn’t, I would have had to pay $200 for those pills. What happens to people who can’t afford copayments like that? I still resent that $4,350 per year, but I’m fortunate to be able to cover it.

Slowly, I started seeing improvements. I finished the antibiotics yesterday, but it’s likely to be another week or two before I’m truly back to normal. I’m hopeful to continue seeing progress in the weeks to come and crossing my fingers that the infection doesn’t come back for me as it does for a staggering twenty percent of patients. And after having C. diff, my antibiotic use has to be as limited as possible; cefdinir is what brought this on in the first place, but many other antibiotics can cause the infection, and now that I’ve had antibiotic-induced C. diff, I’m more susceptible to it in the future.

Meanwhile, all I want for Christmas is to be infection-free as I host another family gathering, hopefully this time in good health and in high spirits.

And snow. Snow would be nice.

All Things Medical

This Thanksgiving, I’m going to be most grateful for having a lot of medical stuff behind me. Although everything worked out in the end, there were some complications during my procedure last week. My surgeon had planned to use radiofrequency (Novasure) for the endometrial ablation, but my cervix wouldn’t cooperate, so she had to switch to the hydrothermal method (Genesys). I woke from anesthesia with excruciating cramping and couldn’t help but moan and cry. It took a few oxycodone during my recovery to bring the cramping down enough so I could leave the hospital. I was sent home with prescription-strength ibuprofen and hydrocodone, which I used in the following days to help with pain. Three days later, I was off the meds and feeling like myself again. It will take a few months to see how well the ablation helps the issues I was having, but I am glad I did it.

Surgery and recovery complete, on Tuesday, I had a previously scheduled MRI of my brain to make sure I’m stable on Ocrevus. I’m getting used to the routine now, taking Xanax ahead of time and always going to the same machine in the cancer center, so it’s not as nerve-wracking as it used to be.

Before my first MRI almost two years ago, I worried about a lot of things: the power going out and my being stuck in the machine, something made of metal flying into the machine and hurting me, some of my dental work being yanked out by the magnetic force, what I would do if I needed to sneeze. Although the other worries have dissipated with experience, I still worry about sneezing or coughing because for an MRI of the brain, my head has what can best be described as a cage over it; said cage is actually a coil, used to generate the images, but it feels like a medieval mechanism to lock my head in. Because of issues I have with claustrophobia, I never look at it, instead having my eyes covered with a washcloth before it is put into place. I got through the first half of the MRI without issue, and I was pulled out for contrast to be administered before being pushed back in for another set of scans. For those of you who haven’t had the pleasure of an MRI, before each scan, the technician or a recording usually tells you how long each picture is going to take. During the scan, I breathe as shallowly as possible to minimize movement for the best images. In between, I take a deep breath before the next one begins. My longest scan was four minutes, and when it was almost over, what started as a tickle in my throat took hold, causing me to cough uncontrollably. I was pulled out of the machine because the technician was worried I was having a reaction to the contrast, but I realized my throat had been slightly irritated for a few days. The four-minute picture had to be restarted, and I was able to control the coughing for the rest of the session, leaving the hospital to go home for a long nap.

This morning, Nurse Angela from my neurologist’s office called to tell me that the MRI showed no changes from my last scan in May, confirming that I’m stable. What a relief! Since I’m scheduled to see Dr. Z on Tuesday, it surprised me that Angela called with the results, something she hasn’t done before. The real reason for her call was to let me know that the imaging also showed signs of a sinus infection, so I should get in touch with my PCP. It made sense. Besides coughing at night and some head congestion, my left foot has been tingling constantly for a couple of days, usually a sign that something is wrong. When I’m congested and/or coughing, though, it can be difficult to tell if it’s a virus or infection or simply allergies, especially since I just got over a cold. My PCP called in a prescription, so I’ll be well again soon.

In addition to seeing Dr. Z, I also have an ablation follow-up with my gynecologist on Tuesday. After those appointments, my attention will turn to Thanksgiving. I’m hosting this year and excited to have my family together for what will be a lovely day.

Just a few days after Thanksgiving, I’ll be going back to work for a new quarter, teaching classes for the first time in six months. I’m looking forward to seeing my colleagues and meeting my new students as we head into the Christmas season, medical management hopefully on the back burner until I’m due for my next Ocrevus infusion in February.

Scorched Earth: Uterus Edition

Alvaro recently gifted me with my second cold in two months. I’m successful when it comes to avoiding germs out in the rest of the world, but when he brings a plague home, I’m going to fall victim to it. And I did. This one was worse than the last, taking me completely out for four days, and I’m still sniffling and congested a few weeks later.

The cold was the new baby in the family, getting all of the attention, so the middle child that is MS felt left out.

“Wait!” MS said. “I’m here, too! I’m doing terrible things to your body, too! What about meeeeeeeeeeeee?”

Middle children are miserable creatures, aren’t they?* My feet tingling and numb as I sneezed and coughed, I had to concede that MS is going to worm its way into complicating everything else that goes wrong for the rest of my life. Its main mission besides making me miserable is not to be left out of anything, ever.

If MS is the middle child and my cold is the baby, the older child is my reproductive system. I understand that some people may not want to learn more about my uterus, so feel free to sign off now if you are one of them with all of my best regards. I understand.

My menstrual cycle (oops—about to lose those of you men who didn’t realize that this is where the post was heading, so fare thee well) has always been difficult, coming with cramps and pain and rage. In the past ten years, that pain has become excruciating, especially on the first day of my period. People who don’t have debilitating cramping may be picturing a woman on the couch with a heating pad and a cup of tea looking mildly forlorn, but those are the kind of cramps Midol can handle, and there isn’t enough Midol in the world for mine. It feels like a 100-pound anvil is attached to my insides and is trying to pull them out, my lower back the string somehow holding everything together, doing a poor job of it.

This summer, things got exponentially worse. Somewhere between day three and day four, my period stops for about 12 hours, and then the real pain begins as it decides it’s not finished torturing me. My back screams as I writhe, trying to find any position that will lessen the suffering. Alvaro knows the drill, but it still freaks him out. I beg him to push all of his weight into my lower back, the only thing that provides a glimpse of relief, albeit temporary. I yelp when he does it, making him jump back, afraid he has hurt me, not understanding how it’s possible that he hasn’t hurt me. “Again,” I plead, sobbing. “Are you sure?” he asks. And so on and so on until neither of us can take it anymore. Although I’ve never considered it before, if someone had offered me heroin last night when this happened, I would have taken it. No joke—anything to make the pain stop because nothing available over the counter helps in the slightest.

I spoke with my doctor about this issue a couple of years ago and went in for a transvaginal ultrasound to see if imaging showed any irregularities. None were found, but the images were murky, and a few weeks later, I lost my vision, sending me on my journey to an MS diagnosis, my “female problems” placed on the back burner, where they remained until I revisited the topic with my PCP at my checkup in September.

We talked about my options. Hormonal birth control was one, but because of my age, it’s not the best idea. Getting an IUD was another option, but that also involves hormones, and as I approach menopause, I really don’t want to mess with them until I need to. Then we talked about endometrial ablation, a procedure she described as burning the uterine lining so that it scars over, possibly stopping menstruation completely, but certainly making it lighter and easier. It felt like the right way to go, especially when she said the procedure could be done in office.

My next stop was to see a gynecologist trusted by my best friend and my PCP. She was lovely and agreed that an ablation was probably best. Because I haven’t had children, she said an IUD would be difficult to place properly and could cause more issues. Then she said the ablation needed to be done in the hospital under general anesthesia, that it will be more complicated and painful for me because I haven’t had children. Unable to successfully get a biopsy during my exam to make sure there are no indications of endometrial cancer (not having children strikes again—have we sufficiently covered the fact that I HAVE NOT HAD CHILDREN?), she decided to do a dilation and curettage once I’m under before performing the surgery.

Said surgery will be happening Monday morning.

I’ve never had surgery, unless you count a dental implant, and I certainly wasn’t put out for that. I’m anxious about anesthesia but looking forward to having the procedure—and hopefully this unbearable pain—behind me. The cold will be gone soon, too, leaving me with that pesky middle child, the one who will never leave home but can hopefully be coaxed into staying in the basement, less inclined to cry for attention with its competition out of the way, there but not there.

There, yes, but more NOT there.

 

*I’m a middle child, but the rare unicorn kind who is an absolute delight. 😊

Resilience and Workarounds

I’ve been working with my community college’s prison re-entry program this quarter for my sabbatical, writing profiles about some of the people there. It has been such a pleasure to get to know the people I’ve interviewed better, and being trusted with their stories a great gift, one that comes with immense responsibility. Each profile celebrates the resilience of the person it focuses on and the incredible work being done at MCC 180 RAP. When the program is ready to publish the pieces, I’ll link to them here.

One unexpected but happy outcome of this work is an English class I’ll be teaching beginning in December to women incarcerated at the Community Corrections Center-Lincoln (CCC-L). The goal of community corrections is to help incarcerated people transition back into society through work detail, work release and education programs. There are two locations in Nebraska: Omaha (where the vast majority of them are from) and Lincoln. Over the summer, women were moved from the Omaha location to the new Women’s Housing Unit in Lincoln, a transfer that took most of them away from their jobs, family support systems and educational pursuits at the community college. I am so pleased to have the opportunity to bring educational opportunities back to them as part of the re-entry program.

I joined the re-entry program director and another instructor at the facility last week. The Women’s Inmate Council was meeting that day, and we attended the gathering to introduce ourselves and preview the classes we’ll be offering. After, we were given a tour by a corrections officer who also works as a case manager in the unit.

I’ve been inside of several prisons and jails in this state, and much of the media coverage about the new women’s unit has been about how beautiful it is, some stories comparing it to a college dorm or even a resort. It is not a resort, of course, but the facilities were far nicer than anything I’ve seen before. What I was most impressed by, however, were the staff members working there. They were friendly and warm to both visitors and incarcerated people. There is a prison staffing crisis in our state, but everyone I saw working at CCC-L seemed to believe in the mission of helping incarcerated people in their transitions.

As we began our tour, we walked outside to a playground and seating area that is used when families visit, lifting and breaking my heart all at once. A small group of women transferring from the prison in York arrived, loaded with boxes and bags of their belongings. They looked weary after the journey, apprehensive, and I wondered if they understood how much things were about to change for the better. Besides being closer to their release dates, they were about to join a supportive, encouraging community to help with their transitions, their focus turning from incarceration to freedom.

Inside the housing unit, there were women knitting together, working out in the gym, playing cards, doing laundry. It was bright and airy, clean, organized but homey. Two women are assigned to each room, fitted out in dorm-style furniture with two beds (not bunks), two desks and chairs, two lockers. The large bathroom for each wing was better appointed than any college dorm I’ve seen, and the women have privacy that they cannot count on in other prisons or jails. We visited a beautifully equipped kitchen where incarcerated people can prepare for earning their food handling licenses. The men’s dorm was not as nice, a gym-sized open room crammed with bunks, but almost all of the men living there will tell you that it’s better than being in prison.

There was so much to take in, and I was glad to see it, but I was on my feet and walking for almost an hour, my legs becoming numb and unsteady. Sigh. Such reminders of my limitations because of MS come at the worst times. After seeing one men’s dorm, the officer guiding us asked if we wanted to see another one, and the other two women were all in. I finally had to cry uncle and let them know I couldn’t go on much longer, ending the tour for all of us.

I should have said something before we began, letting them know I was good for 30-45 minutes, or I could have spoken up halfway through and bowed out a bit early. I could have brought my cane for support, but I so rarely need it that it didn’t cross my mind.

The next day, the re-entry director apologized to me over e-mail. She had nothing to apologize for, of course—managing my MS symptoms is not something I can contract out to other people. But she’s lovely that way, so I did my best to reassure her that I was fine. And I was fine. I’m fortunate that I’m able to recover after sitting for a while, that I’m still able to do all of the things that require walking in a regular day for now, including going on a walk just for exercise. It’s a good thing I’ve never liked shopping because the time limit on my being upright would take all the pleasure out of it.

My legs are my biggest reminder of MS each day. Because they fail me after standing for too long, I’ve ducked out of a few social gatherings earlier than I otherwise would have. Where I used to stand at the island to do prep work as I cooked, I now have to sit at the table when I can to save my legs. If I want to walk more than a mile, I need to split that walking time up into more than one trip or stop at a bench to recover. After my 30 good minutes, I feel it first in my thighs as they go numb, getting so numb that I cannot feel my hands on them. Next, it spreads to my knees, and I have to focus on the way I’m walking so they don’t buckle. I feel it in my toes, too, as they tingle, but I’m grateful for that tingling because at least I can feel something, unlike the nothingness I feel in my upper legs. I’m fortunate to work in a career field where I don’t have to be on my feet constantly.

In prison, where the rules and limitations of the system create obstacles, creative problem-solving results in workarounds. For example, without something to boil water for hot drinks or ramen noodles, some people will drop a live wire into a cup of water to heat it. Floss can be useful for cutting things or threading eyebrows to shape them. Recently, an incarcerated man told me about a friend who used his prison ID card to slowly, patiently slice up a watermelon from the institution’s garden, one he enjoyed that much more for the effort that went into it.

People with MS have to come up with their own workarounds to live as fully as possible when it comes to daily activities, employment and exercise. Behind the scenes, their brains are doing that as well. When lesions interrupt signals from traveling from one place to the other the normal way, the brain helps those signals go around the lesion, creating a detour-like path. The brain’s ability to do this decreases over time as lesions increase, but it slows symptoms in the early stages of the disease. Our ability to adapt is greater than we know.

Adversity helps us find and build our resilience. One reason I enjoy working with incarcerated and formerly incarcerated people is because they understand this better than most. There’s so much to learn in overcoming circumstances that would hold us back, whether they have to do with addiction, poverty, disability, illness or loss. Incarcerated people would rather not be incarcerated, and people with MS would rather not have MS, but finding ourselves in these situations anyway, we discover strengths we did not know we had and purpose that may have otherwise eluded us.