MS, PTSD, and Us
Multiple Sclerosis is currently found in over one million Americans. Women are three times more likely to contract MS than men. And, unfortunately, the number of even currently married women who have MS is not readily findable, at least to me and my limited knowledge of search engines. I did find that 21% of MS based marriages end in divorce which is the approximate average for the general population.
Those veterans with Post Traumatic Stress Disorder affects approximately 31% of Vietnam veterans. 7% of Vietnam veterans suffer from both PTSD and Traumatic Brain injury and I could not find statistics on PTSD, TBI, onset of dementia and severe depression.
My spouse and I
All the above duly noted, Kathryn, my spouse, my closest friend, my wife, was early on diagnosed with relapsing remitting MS in 1994. This past year a doctor on staff at UCSF has diagnosed a change in her MS to primary progressive.
As a Vietnam combat veteran having served in country from 1968 through 1969, I was diagnosed with PTSD, TBI, onset of dementia, and severe depression in 2008 and ongoing.
Kathryn and I met with a series of very revealing letters during my time in Vietnam. Shortly after I returned from the war, we became engaged and were married in 1970 and have remained married for 48 years and continuing. Note her diagnosis was in 1994 and mine in 2008 and as of today, she is a retired teacher and I am a retired school administrator. Retired being the operative word. I am fortunate to be able to care for her on a daily basis. And, because of some “lucky” circumstances, we are able to weather the financial burdens of both our conditions. The potential for financial issues within our relationship is avoided.
Recipe for a toxic environment
The new for this lengthy prelude is to support the concept that Multiple Sclerosis and Post Traumatic Stress Disorder create an incredibly toxic environment in which we live. Let me hasten to add that Kathryn and I have always believed and acted as us against the world. That is our relationship yesterday, today, and tomorrow. So when I next focus on some main issues we have thus far weathered them all rather successfully.
Neither Kathryn nor I drive an automobile any longer but we have someone who now lives with us, along with her two young children, and who is a major support in driving us to a variety of places and on most vacations. However, I am a vet who cannot be around groups of people as my PTSD can rise to a dangerous level quickly, unexpectedly, and without control. As a result I spend a great deal of my time “alone in my backyard”. This issue is one of several common threads among all who have PTSD. Kathryn is basically non-ambulatory so she spends a large portion of her day in a chair. She needs and deserves companionship as do most married couples. This is very difficult for me as I sleep only about 2-4 hours a night so she frequently goes to bed before me and arises long after I have been up. This creates a problem for us in that she is constantly seeking more together time while I am pushing against that. We do both smoke (health risk we are aware of) but that does bring us together several times a day.
We both have memory problems. Sometimes it is as light hearted as neither of us can remember what we are doing even when we are together. Sometimes it creates tension in I cannot remember that Kathryn needed me to perform a certain task and I forget, seemingly to set up an “I don’t care” moment. She sometimes has to be reminded several times of a doctor or dentist appointment and I have to remind her several times a day which creates a frustration for me which can easily lead to anger.
Things she used to be able to do
Since Kathryn suffers from fatigue as well as a severe weakness on her right side. And, while we have a once a week house cleaner I perform cooking, dishes, helping with dressing each day as well as showers, retrieving items for her several times a day, and helping Kathryn get dressed for bed as well as get into bed. I count this as together time but she does not, at least in terms of quality time together. I can also become depressed and frustrated with what seems to me to be work overload. She becomes frustrated and sorrowful because she knows these are all routine things that she used to be able to do, but no longer can. I also find this debilitating because we both have our own ways of doing things and they regularly collide.
Familiar routines turned tense
Another of our seemingly routines was attending church every Sunday. Kathryn still does but I no longer can and this creates friction because a history of being together at church no longer exists. A familiar routine that now creates tension. This may seem to be a small piece of our lives that many may see as trivial but to us was a critical piece of our relationship. We have always been aware of the Lord acting in our marriage. We have always invited Christ to sit with us in whatever we did. There are many reasons for my new intransigence but these are all rooted in PTSD.
I cannot fix the problem
Several times a year I fall into a depression that takes days (and often a call to my psychiatrist) to shake it. I become short and unruly with everyone I come in contact with, but especially Kathryn. Every little thing becomes a point of contention. I am often an argument looking for a place to happen and Kathryn will inadvertently become that place. On the flip side, Kathryn becomes depressed and will cry easily. For me, crying is an opportunity to make things better. I am a fixer. Much of the time I end up frustrated and angry, at me, because I cannot fix the problem. I want desperately for things to be better even though there really is no fix.
More complicated than a Kabuki dance
Can you imagine how all these issues affect our sex lives? Made even enormously more complicated by the most personal effects of Agent Orange. Kathryn and I were a pretty normal married couple when it came to sex. As a married couple we enjoyed all aspects of married life including this aspect. Today it is more complicated than a Kabuki dance. I usually retire at around 2 in the morning and rise around 5 am. Kathryn usually retires around 11 pm and rises between 7:30 and 8:30 in the morning. In addition to timing issues, there are certain things I cannot do, though I have tried every aid available. Feelings of inadequacy abound, for both of us.
48 years, going on a lifetime
In all of these issue over the last many years we love each and have remained faithful to each other over 48 years, going on a lifetime. We have never confused the diseases and syndromes with the person. We are surrounded by a small circle of strong, concerned, helpful friends. Kathryn is one of the strongest people I know. I recognized that the first time I sat with her through childbirth. She is not now nor has she ever been prone to giving up. I am a US Marine trained by Marines, gone to war with Marines and I am proud to say I have never left another warrior on the battlefield. Kathryn is the only thing that means more to me than all the Marines I know. Deep inside I know leaving is just not an option. When we argue, we argue in a positive way. No name calling, no long distance sniping, and we try to “get out” our feelings all at once and with little carryover. But we are also blessed in that we had many years of bonding, of creating a relationship that could withstand the now trials and tribulations we now face.
What I wish for married couples
What I wish for all the married couples that read this is for them to know they are not alone. That while our combinations of diseases is a daily challenge we meet that challenge with hard discussion, tears, humor, help from Christ. Oh, and holding hands.
I will end this the way I began. It has been, is today, and will be tomorrow the two of us together.