Harriet Schlacht
New York

Stories come from any number of situations in a person’s life.  The good ones tend to revolve around one particular moment that shatters our view of life.  That moment of mine was on a Saturday morning a little over three years ago.  I woke up with TM.  Half asleep, I went to use the bathroom at 6 am.  I remember feeling a little tingly, a little odd, but thought I’d just been sleeping funny, maybe on my side.  I didn’t give it too much thought. Two hours later, I woke up and realized that not only could I not feel my left side from the breast down, but that I literally could not get up on my feet and walk without holding on to furniture for support.  I thought I’d had a stroke.  As it was the Sabbath, I tried to wait until that evening to deal with it.  By late afternoon, I could no longer contain my anxiety. Later, I spent that night at the emergency room baffling the doctors on shift.

Over the weekend I was diagnosed relatively quickly.  In retrospect, I believe the quick diagnosis was due solely to serendipity.  We were visiting Baltimore for the weekend and I ended up at a county hospital a mere few miles from Johns Hopkins.  Those were a few surreal and frightening days at that county hospital. I remember waiting for my MRI to come back praying that it wasn’t a brain tumor.  Silly as it may sound, I remember making it okay in my mind; I cleaved to my notion of G-d and willed the situation to be okay, including the idea of leaving my young children motherless.  Needless to say, I passed some of the worst moments of my life in that room. Luckily, those tests came back negative.  Unspeakably grateful, my deepest fears were not confirmed.

We left Baltimore and drove back to New York with an odd, never before heard of (by myself) diagnosis and a strange new reality.  For the first time in days I was away from hospital personnel – namely, nurses and neurologists.  As we drove continuously up the New Jersey turnpike, I remember watching the pinks and purples in the sky grow increasingly dim as it became dark. As our kids quieted down, my husband and I were speechless.  We tried to make sense of what had turned a perfectly innocent weekend into some unknown nightmare.  Most of all we wondered what lay ahead. We did most of this quietly in our minds.

Once we reached the driveway, I opened the car door and tried to pull myself out. I had this creepy memory of Ariel, the Disney character, a mermaid who, as an adult, acquires legs and has to learn to walk from scratch.  I got out of the same car I’d gotten out of a hundred times before only, now with wobbly, numb “sea legs.”  It is one thing to be needy in a hospital setting where there is such an obvious connection to sickness, debilitation, (excluding giving birth); why else would one be there.  It is an entirely different matter to be needy back in one’s own personal environment.  Like a litmus test in a chemistry experiment, now I was back on my home turf.  We were back from our trip to Baltimore and immediately the changes surfaced glaringly. Discovering new inadequacies daily saddened and frightened us both.

Having faced and overcome certain challenges in my childhood, I honestly believed in my heart of hearts that I was equipped to deal with this new life. That week back at home in New York, before going to Kessler for rehabilitation, was difficult.  Though people close to me tried, I felt like I was in no man’s land; an in-between stop-over where no one was around to help me make sense of this odd thing that had happened. It was so profoundly painful for me that I haven’t thought of it since being asked to write this piece.

I remember this: it is the middle of the afternoon and I’m lying on the carpet on the living room floor.  It is a room with a high ceiling with a sunken living room, a pre-war building. The kids are in school and it is utterly quiet; a rarity in which I had absolutely no distraction, nothing to attend to.  For those of you with little ones, you understand, this is usually amongst one’s most blessed moments when the heavens open up.  I finally, thankfully, feel more curious than scared. Quietly, I try to assess the sensations of my lower body.  I realize that the surface sensation along my left side is diminished. I can’t quite feel it the way I can when I touch my right side.  All alone, I remember watching the sun streaming in the tall window witnessing quite a beautiful, quiet moment, and admitting to myself that I felt completely horrified and betrayed by my body. It is a surreal feeling. I touched my body without the feedback that my body part is being fully touched. In natural denial, I began to believe that if I did all sorts of deep calinetics exercises, I could wake up my nerves, force them to feel. Looking for limits, I pushed my body very hard.  No doubt, I had trouble doing many of the exercises I had previously mastered. I did, however, find that nugget of truth in my body that I was desperate to find; I learned that I CAN feel deep muscle pain, that the diminished sensations lie primarily on the skin’s surface and on the soles of my feet where it is patchy alternating with hypersensitive areas.

My depressed feelings gave way to deep philosophical questions about the sense of a fragmented self.  I found a great area of psychology which really spoke to me.  A woman, Judy Dunlop, a woman with MS, crossed my path. She taught a class on “Psychosynthesis.”

Back from Kessler rehabilitation, my responsibilities as a stay-at-home mother to two toddlers resumed. I was so lethargic during that time I had to rest almost twice a day. I needed a lot of household help at the time.  Thanks to my parents, I got it.  As the months passed, I grew curious and continued testing myself. I remember the first few times back at the gym, in the pool, at a strength training class.  I used to love to speed walk outside; now I had to struggle to do five leg lifts.  There were times I cried quietly in the back of the strength training class.  I felt very humbled. I wanted people to give me a break and not look at me with prior expectations.  I learned to stay in my reality, not to ignore others, but to stay with my new reality without shame or apology.  I realized, happily, that I could still do laps even though the legs I was using to kick with didn’t feel the same. My lower legs feel quite tight, as if they are thoroughly wrapped with bandages from toe to calf.  But to my delight, they move well in the water and with Vitamin B shots, I have enough energy for swimming laps.  I’ve accepted feeling useless afterwards, as the water seems to knock the wind out of me. As I adapted to my new body, I realized that my mind seemed preoccupied with the damaged side.  I remember a line in a song by Paul Simon “…don’t ignore the obvious child.” I forced myself to recognize that there is still part of me that DOES work.  Focusing on my negative is not a correct view as it is not the whole picture. I did a lot of cognitive restructuring during the year following.

While in Kessler I had plenty of time to think. One of the thoughts that came to mind was my inner voice saying, “But Harriet what about a third (baby)?” I have always wanted to have more than two children, being one of four children myself. I became pregnant only three months after TM struck.  My neurologist told me that there was no risk involved, but I learned quite quickly that it was going to be a challenge. I was sleepy for most of the pregnancy and as the weight came on, the banding sensation in my feet became unbelievably unbearable.  I used to speed walk as a hobby.  From my second trimester on, even wobbly, I could not walk even one block to get milk from the nearby shops.  I took the car, literally, everywhere.

The other issue where TM and pregnancy intersected was with bowel movements. My TM body had trouble having BM’s on my own from that first morning with it in Baltimore.  As such, I was experimenting with suppositories, as well as enemas for months.  In my third month or so, it finally dawned on me that with a baby growing inside, it might not be such a smart thing to be simulating cramps, never mind the major time inconvenience and pain they cause. So I started experimenting with oral medications. I had taken Miralax and then only upon running out of my supply, I looked to my doctor to fill the prescription.  “I hope you’re not pregnant,” she commented. “Well, in fact I am,” I answered.  “Well, H, you should be aware that there are no studies that show that Mirilax is safe, at the very least.” Naturally, I spent the rest of the pregnancy obsessing.  I finally got the appointment with the gastroenterologist who I had been waiting to see for months.  He recommended CITRUCEL, which I highly recommend for pregnant and non-pregnant women.  I can’t believe how easy it was compared to the other necessary choices.  Since then, I have been tapering it down to nothing.  I now take nothing for this function.  I do think that juicing with raw vegetables and fruits (“Greens for Life”, by Victoria Boutenko) is a good place to start, especially if pregnant women prefer to try natural remedies first.

Now, for each woman with TM, her pregnancy will certainly raise different issues and challenges. The banding in my legs, as I mentioned earlier, was maddening and incapacitating.  The fatigue was extremely debilitating and the worries over what my drugs did to my baby were heavy.  But another feeling would arise from very deep inside. I felt in my gut that what I was doing (growing a child while my body had TM) was Herculean.  I remember feeling like Rocky Balboa climbing the steps to that Philadelphia monument as he was training for his first boxing match.  As most women will do in any particularly trying pregnancy, I raised myself up to the challenge.  I wanted so badly to partake once again in the privilege of bringing another soul into the world.   I felt myself on a mission and those of my friends who are the more verbal types, (a prerequisite for being pregnant with TM by the way), recognized this and supported me in this view of my decision. I cried often.  I cried much more during this pregnancy than during my previous ones. I think that depression might be studied in pregnant women with TM as it feels that there is much to be depressed about with limitations growing by the day.  One piece of advice my sister would give to me repeatedly, was to count down to the end; sometimes she would make me mark off on the calendar each day that went by as a real accomplishment.

An inner doubt stirred deep during the pregnancy which had to do with me, not the baby and that is the question, would my body be weakened permanently from the pregnancy, would my chances for recovering areas of feeling be compromised? In a nutshell, was this a very bad time to have this baby?  I will say this, how much recovery could I have had, had I not put the wear and tear on my body, I will never know. I do know that I have recovered quite a lot; I have healed to a decent extent.  And I am grateful.  Now I am like a normal person with a fascination for comfortable, stylish shoes.  I take certain things very seriously, i.e., B shots, shoes, energy issues, drinking raw greens. Regarding shoes; choosing shoes feels so very intimate. I need to pass through such scrutiny before I commit to it.  I imagine how it would feel going down hills (high pressure) with them. I wonder if they’ll stretch by the fifth metatarsal region and how much.  It is very uncomfortable to wear most anything other than sneakers, and then, I would not exactly call my sneakers comfortable.

This pregnancy was one of the most miserable times in my life (no thanks to the massive amounts of hormones at work during this time as those who have been pregnant before know).  As utterly miserably hormonal as I was, that’s equally how worthwhile I see the endeavor.  Aaron is now a toddler.  When he isn’t having a tantrum, he makes me smile.  He probably will never completely understand how much of a miracle his life is, but I know it, and those who were close to me during this pregnancy might recall it to him years to come.

I wanted it to be a natural birth, but was doubtful as to whether or not my body would cooperate in the final moments/hours.  I opted for a ‘spinal’ since I’d had a bad experience with an epidural in a previous labor.  When I was told to push, though I did not feel myself pushing, the baby, surprisingly, came out.  My first baby was born c-section.  As such, I knew the ‘worst case scenario’ going in and was ready for this possibility; but it turned out that there was no need. 

Lastly, a few words on TM in general.  I have learned to accept the weirdness, not fight it. I think about it mostly in terms of how to deal with my symptoms more effectively. More comfortable shoes to buy, heated slippers, a better brand of wool socks (winter is a hard time for people with TM, probably across the board). I’ve learned that it is what it is. I don’t need to nurse my wound. In fact, I don’t feel my situation worthy of drama most of the time.  Only hormones during pregnancy can play havoc here.

I had met, for lack of a better word, tremendous people on the Transverse Myelitis Internet Club; people who I could relate to, who inspired me, who calmed my spirit like no other well-intentioned people could, try as they did. I owe the recovery of soul in no small part to the many individuals who gave of their time to write to me and to listen to my thoughts.  I cannot think of this period in my recovery without thinking of them. They rooted for and encouraged me.  I felt strong and proud of my decision.  That is, when I wasn’t off in search of my insatiable craving for sushi (vegetable only!).

Getting TM, while not a choice on any of our parts, and then carrying a baby, which is most definitely a choice, with it has given me much more than it has taken out of me. I like to believe that I now harbor added sensitivity that just was not there beforehand.  All that and another child to boot.  Not such a bad deal really.