Wednesday, July 30, 2008

Fear of Loss

I have written about this two or three times over the past few weeks, but each time I have removed the posts or portions of the posts that refer to my pdoc disclosing he is unwell. Each time I wrote about it, afterwards I felt I was being unfaithful, traitorous, untrustworthy, or unsupportive of him. I felt afraid that my apprehension and fear about him being unwell was both unhelpful to him, and proof that I am selfish in my fear.

I need to write about it though because I am terrified and extremely worried for both of us and it is really affecting me.

I am very concerned for Dr. X. He told me he has Multiple Sclerosis (MS). He needed to disclose this too me, because MS can be unpredictable and there may be (and lately have been) times when he needs to be away from work. I need to know why. I need to know it is not me when he calls and says he cannot meet for our appointments.

When faced with this kind of information my first reaction is to inform myself about what the information means. MS is a disease that attacks the central nervous system. It breaks down the myelin that acts as a protective coating for the central nervous system. It causes lesions in the white matter of the brain (an effect of the breakdown in patches of myelin). From what I have read MS can be a very difficult illness to manage.

Some people may have very few symptoms for long periods of time and then become ill for periods of time. Some people have minimal symptoms and some have very difficult symptoms to manage. It seems the disease's symptoms are very individuated to each person.

Symptoms can include (but may not include, or may minimally include): Vision, balance and short term memory problems, bladder an bowel problems, incoordination and muscle stiffness and sometimes paralysis and severe fatigue.

From what I understand there are four subtypes of MS:

Relapsing & Remitting MS; a type of MS where the person has times of relapse into the illness and then the symptoms remit for periods of time,
Benign MS: (unsure), but I think this is where the person with MS has minimal symptoms and years after they have been diagnosed they are still functioning very well
Progressive MS, which includes two sub-types:
Primary - Progressive MS- People with this form of MS have symptoms that continually worsen, with no relapses.
Secondary Progressive MS - This version starts out as a relapse and remitting pattern and eventually becomes unremitting with a continual gradual worsening of the conditions symptoms

That is the "education" aspect of my fear, then comes the sense of intense and deep sadness for my pdoc. He is so young (younger than me). Has a family, is so active and seemed so healthy. He is generally a "blank page" to me. He rarely talks about himself or anything personal. However, from meeting with him and talking with him I know a bit of what he is like.

He is extremely intellectual, well read, and I see an intense desire for him to learn and understand everything he comes across. I worry that MS will affect his ability to enjoy intellectual undertakings, like reading and remembering, in the way my depression and maybe also, the medications I take, have pretty much destroyed my ability to read, remember, follow any book that is more difficult than a newspaper.

Short term memory problems can really be a huge barrier to being able to follow plot lines, or in the case of academic articles, scientific information. Not being able to read has caused an intense sense of loss in me. I hope Dr. X's MS does not affect him in this way. I also know he plays the piano, and is very physically active. I pray he is able to continue these pursuits. I am really worried for him.

Now comes the really selfish part. I am really worried for me too. A huge part of me wishes I could magically become better so I did not need his support. I want so badly to be better for him, so he had one less thing to worry about. I understand how a chronic illness can impact your life. I recognize that at some point he may have to use what energy and good days he has to take care of himself and his family. Even though I completely understand how his need to make himself and his health and well being need to be the most important thing in his life, I am terrified he will leave work. I am so scared I will never see him again. I feel afraid losing him will be a loss in the way losing my Mom was a loss.

I have never met anyone like him. I know that without him I would never have survived these past 6.5 years. I recognize I am stronger now, but I am certain there is no person on earth I could connect with, open up too, and be as honest and open as I am with him.

He gets me, like I know no other pdoc ever would or could. He understands my lifelong search for meaning and purpose. He always gives me the sense that I am a normal human being, with intense, yet not strange or unordinary struggles, without my feeling dismissed or misunderstood. He understands how important my dreams and their symbolism are to me and my life, how much value I place on my struggle to create, expand and relay my search for meaning to others and how important my working towards a purposeful life is to my well being. He gets me.

I am so afraid I will have to start from scratch with someone else; that I simply will not connect to a new person, that I will need to spend this long learning to trust someone else, Most of all I am so scared I will lose my connection to someone who is as important to me as someone in my family. Even if he needs to leave work to take care of himself. I am terrified of the sense of loss I would feel if I could never see him again.


The Silent Voices in my Mind said...


I know this is a really difficult thing to be faced with. This is serious and there is no denying that so it's a little like hitting your head against a brick wall.

I want to reassure you, though, that being concerned for your side of the equation is NOT selfish. It is part of the whole picture. It's not as if you don't care a bit about him and are just mad about an inconvenience. You are recognizing that this illness is going to impact YOU as well as him. To do otherwise would not be healthy.

You are a good, kind and loving person. I hope you have as long as you want/need with your pdoc. But if/when you need to find another, I am confident you will be able to find someone who can help you just as well, albeit in a different way.


Polar Bear said...

I agree with SV - I don't think you are selfish at all. You know, I try to put myself in your shoes - wondering what it would be like if V were to have a serious illness and everything. I think I would be a lot upset FOR ME. I'm more terrified about what will happen to me. Altho of course I do care about V, but I would be devastated for me.

I don't think you're selfish, Aqua. I really don't. You're managing this as best you can, and hopefully I can help support you through this very difficult time.

Polar B.

Aqua said...

Thank you so much SV and PB,
I spoke with Dr. X about this today and he said the same thing. He says if he ever does have to be away for any length of time he has made arrangements for me to see someone he completely trusts.

Makes me feel a little better...but I don't want to see anyone but him, so I hope he stays well, or mostly well.