Careful what you wish for

12 years ago today, October 20th 2002, I woke up, went to the kitchen in my pajamas, Sunday morning, made breakfast, went to the living room while eating it, flipped the pages of a magazine, got up again, put the mug and plate in the kitchen sink – and then everything went black. I have a very faint recollection of feeling dizzy and nauseous but I don’t remember any more. I know I walked three or four steps because I was found on the floor by the kitchen door. On the wall there was a mark my fingers made possibly when I was trying to hold on to it not to fall. But I don’t remember. No one knows how much time I was out. My left knee and arm were bruised, and so was my head.

The story they told me was that my grandfather, who was living with us at the time, heard me crying and found me on the floor. He called my mother who was in the bathroom taking a shower and she realized I was in a disoriented, confusional state. My short term memory was gone. The last weeks of my life were gone. She called her therapist who told her to take me immediately to a hospital. She asked me my best friend’s number, which I gave her by heart, and called her to know if anything might have happened in my life that could have caused such a shock, such confusion, such dissociation. My best friend and her mother then joined us at the hospital.

At the hospital they gave me something to drink that I suppose was a sedative. It must have been strong because I remember drinking it and my tongue tingling. I was seen by a neurologist although I don’t remember talking to him. I remember getting up from the CT scan, putting my glasses on and seeing a really tall and really black doctor in the corridor looking in with concerned eyes. I didn’t know who he was but that image stuck with me. He made me feel safe somehow. Later on I asked my mother if she knew who he was and she told he was the neurologist who’d seen me and that he’d spent a long time talking to me. I don’t remember any of this, I just remember seeing him in the corridor and the look in his eyes.

While we were waiting for the results, I remember asking myself, completely puzzled, why I was wearing glasses if I never leave the house without my contacts, and why I wasn’t wearing a bra, another thing I just don’t go out without. I didn’t remember that just hours before my mother had dressed me to take me to the hospital and she wasn’t going to be bothered with bras and contacts. Similarly, I asked everyone what time it was. People told me it was 3. And I asked them “am or pm?” Then I wanted to know what day it was. They told me Sunday, October 20th. Bewildered, I remarked, “October 20th? Then my birthday was three days ago…” I saw everyone’s faces lit up. They thought I was going to remember. “Yes, sweetie, your birthday was on Thursday.” I searched inside my head but had to give up. I didn’t remember.

Finally the results showed no abnormalities so they shipped me to psychiatry. While I was waiting to be seen by a psychiatrist I saw my ex-boyfriend’s number written on my friend’s hand. She had asked me for the number and I had given it to her but again I didn’t remember. It was easy to think this could all be psychological. My ex-boyfriend and I had broke up two weeks before, I was hurt because he hadn’t even texted me on my birthday, and we had been together the day before so he could give me back some things I’d left at his place. This is why my friend wanted to call him so she could know if anything had happened the day before that could have led to something so drastic. But no. We had quite a peaceful meeting.

However that wasn’t the only reason I was sad. My mother and I weren’t speaking to each other then, and our family was going through a rough time with my grandfather being ill and living with us. Plus, my third year in college had just begun that week and I was feeling lost. I knew I didn’t want to be taking that degree but I didn’t know what I wanted to take. If I were to change, that was the occasion to do it because it was right in the middle of the four-year degree. But I didn’t know what to do, so I kept going. My English teacher had given me an assignment for Monday, which consisted in an analysis of a science fiction short story. In the story, the main character’s memories were stolen or lost, I don’t remember anymore, but I remember thinking, as I was working on it before meeting with my ex-boyfriend, something like “How nice it would be if I could just forget some of the things that happened in my life lately.” To this day, I’m really careful about what I wish for.

Then came Sunday. Despite not being in a good place in my life, I woke up feeling happy because I had plans to be with my best friend. I wasn’t going to be stuck at home feeling bored, lonely and sad. And then it all happened. At the hospital the psychiatrist gave me some sedatives for emergencies and told my mother I should seek therapy. I went home, ate dinner, went to bed, slept for twelve hours, and when I woke up I started putting together the memories that were slowly coming back. The next days I managed to remember everything except for much that happened on Sunday.

I still don’t know what happened. No one ever gave me a clear explanation. My family doctor afterward ordered a lot of tests to rule out possible physical causes. I repeated the CT scan, had and EEG, an echocardiogram, a Holter test and blood tests. Everything came back normal. The only test that was missing here was an MRI. I wonder what an MRI would have told had any doctor remembered to order one. Judging by the fatigue, it’s likely I already had MS. How many lesions, if any?

To this day, what happened 12 years ago is still the scariest moment of my life, scarier even that hearing a multiple sclerosis diagnosis. When you lose your memory you lose parts of your identity, you lose a sense of self, you lose reference points, you lose anchors to hold you, you lose cause/effect sequences that help you make sense of the world. Was it purely psychological? Was it plain dissociation? Was it a defense mechanism in a very stressful moment in my life? Is this what happens when I can’t handle the pressure even though I think I can?

The reason I’m remembering this is because I have been worried about me lately. I have been dissociating more and more. The other day I was driving, I got lost in my own thoughts, and suddenly I realized I didn’t know where I was going and I didn’t remember how I got there. I recognized where I was, but it wasn’t the place I wanted to drive to. It’s like I fell asleep but kept driving. Should I worry or this too shall pass?

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12 thoughts on “Careful what you wish for

  1. It’s difficult to “like” this post, when I certainly don’t “like” the feelings of dissociation you are going through. But it is a great post. I hope you are well.

    Liked by 1 person

  2. Thank you for sharing this. It helps me to better understand what you go through with your MS and what my friend goes through with hers.
    I’m gearing up to write my 10 year chronic illness happy birthday for Friday, Oct 24th. I don’t have MS, but with my condition’s disconnections and memory loss, I can understand how one lose pieces of one’s self and feels shifting of…well everything. I’m not comparing, it’s just that people so rarely understand this part of it.
    I thank you again for making me feel less alone today. May you be blessed with strength for your journey.
    aBodyofHope

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  3. Reblogged this on aBodyofHope and commented:
    March is Multiple Sclerosis Awareness Month. Since many chronic illness symptoms can mimic MS, and since MS is completely different in everyone with the disease, the people suffering can get lost behind the vague name. This courageous young woman, blogger, and MS survivor shares about the “unforgettable” week of her diagnosis. She puts a very clear face on such a foggy disorder- thank you for reading for better understanding.

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  4. It could be due to a number of things. Possibly a vascular cause (which isn’t necessarily visible on most of the standard tests unless you have some type of venogram). Could be a clot or narrowing in a vein or artery leading to the brain such as the jugular vein. If you have MS it is highly likely! Check out this article about CCSVI (Chronic Cerebrospinal Insufficiency) http://www.nytimes.com/2012/10/28/magazine/a-controversial-cure-for-multiple-sclerosis.html?_r=0

    There’s a guy in California, Dr. Michael Arata who does special imaging for this.

    The surgery is still considered experimental but some people have benefited quite a bit from this approach.

    The blog below cites a bunch of journal articles that are more favorable than what the above report suggests.
    http://ccsviinms.blogspot.com/

    They raise an interesting point that many of the most-publicized journal articles are written in neurology which is biased towards MS being considered primarily neurological rather than vascular, but the vascular journals apparently are quite prolific with favorable studies.

    It is also noted that there are competing interests coming from the pharmaceutical industry which are likely driving the studies that seek to disprove the vascular theory.

    My grandmother had plaque in her jugular vein on one side and was fainting and falling alot because of it. She also suffered confusion as a result. Before you assume this is dissociation it really might be worth looking into at least the testing to see if you have any vascular issues.

    Liked by 1 person

  5. Thank you for your comment. I have read about CCSVI but I will look into those links in more detail. Although I must say that for me right now I consider more radical treatments like surgery or stem cell therapy as last resort. I’m thankful that I can still lead a reasonably normal life despite some of the challenges that come with MS. To this date I still don’t know what caused that memory loss and confusion. I’ll probably never know and it’s likely that it was a mix of several different factors. I know that I’ve learned not to take anything for granted, I’ve learned that memory is a huge part of our identity and narrative, I’ve learned that everything can change in a matter of seconds, and I’ve learned to be really careful about what I wish. I was only 20 but I’m glad I learned these lessons at a young age and that I keep them with me in my heart.

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    1. That’s good that your MS is not significantly hindering your life and you’re right, things can change. I’m 55 now and have been sick for years with one autoimmune condition stacked on top of another as I get older. All of my doctors now work within a big corporation that seems to be rationing care so I’m learning that with all the delays involved I need to be proactive and not wait until I’m in crisis to act.

      I have actually asked my primary care doctor to refer me to have vascular testing done because I have Dysautonomia and don’t know the root of it. He dismissed it out of hand because it seems he is much more traditional than I thought, but I think this is the only way that I ever will find out if it’s vascular or not. I figure I can get the testing done and either rule it in or out. If the tests are negative I will know it is not vascular and won’t need the angioplasty procedure and then can look toward other causes. If they do find something they can fix it before it causes a stroke or aneurysm and then I won’t have the problem down the road. The older you get the less viable doctors and healthcare systems consider you and the less likely it is they’ll bother referring you for treatment.

      I think this is a much more conservative approach than stem cell, but more aggressive than taking medication.

      I’m basically bed-ridden and am at the point that it’s getting difficult to do everything on my own anymore. At some point though if my symptoms continue to negatively impact my life as they’ve been doing I wouldn’t rule stem cell transplant out either. My treatment is going nowhere fast and I’m ready to get things moving. It’s been languishing on the back burner for way too long.

      I’m now looking into a number of out of town evaluations, vascular and otherwise because it seems to be a huge problem in this country that patients are sidelined when they don’t get better within a certain time-frame.

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      1. I’m sorry to hear about your growing troubles with your health. I agree you have to be proactive. And go with what your intuition tells you, even if your doctors or insurance think otherwise. You have to fight for yourself. You have the right to the best health care you can have. I really hope things work out for you and you can figure what’s wrong.

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