Wednesday, October 29, 2008

The Most Difficult Letter I May Ever Write...

Dear Family, Friends, Coworkers, Acquaintances, and Small Pet:

I am writing to inform you that, contrary to what I may be telling you or what you may think you are observing, it is a lie...a falsehood that I have been perpetuating for several months now. Something I have been saying or pretending to be as a means of hiding behind what is my truth...something I have been actively trying out of desperation to cover up because of fear and a sense of vulnerability.

I have Multiple Sclerosis and I am not well. These past few months have come with a new level of loss and grief as I have struggled to manage, hide, and deal with ever-changing and perplexing symptoms of my MS. I have wanted to believe out of desperation and fear that these "changes" were simply temporary...that, as usual, I would experience new symptoms (relapse), but they would eventually go away (remit), and I would happily return to the same level of functioning I have taken for granted since I was diagnosed in 2003. It is with deep sadness I must admit to you, but primarily to myself, that this is not the case. I am slowly becoming "disabled"...a word I both abhor and one in which I am terrified to speak out loud.

I am losing cognitive abilities. Something I am far more frightened to admit or deal with than any trepidation I might experience in having a leg severed from my body. Yes, I know that sounds extreme...certainly losing a leg *should* be far more traumatic than a slow decline in one's mental capacity? But in my world and way of thinking, it is not. You see, I could learn to walk again with only one leg...and I have a second leg to carry me as well. What I do not carry spare parts for is my MIND and my ability to speak, make decisions, process language, experience regulated affect, and a whole host of other abilities each of us uses every day as a defining feature of who we are as a person.

I am experiencing a constant and sustained level of fatigue. No, I am not depressed. Depression would require a mood or affect change that would result in a lack of desire to participate in the world around me. Believe me when I say now, my DESIRE to participate is there, but the basic energy to do so is generally absent. I find most days, it becomes a guessing game of just how much energy I must conserve to complete the simplest of tasks...and how much energy I must expend just to fulfill the duties of my employment. When you have asked me to do this or that or go here or there and I have declined, you may have been left feeling as if I did not care about the activity...or worse, I somehow did not CARE about you. I can only apologize for my lack of clarity and/or flippant explanations I have provided or any hurt feelings you may have experienced. It has never been my desire to shut you out of my life...but I realize by now you may have chosen to turn away from me as a means of self-preservation.

I am unable to walk distances I used to glide through with ease. Contrary to the negative chatter inside my OWN head, this is not simply the result of a character flaw or laziness. The nerves that used to carry the necessary impulses to move my legs through sustained periods of exercise no longer are firing in their general patterns or directions anymore. I spend a great deal of time experiencing either a "cramping" sensation in my lower extremities or, worse yet, no feeling at all in parts of my legs. I stumble more than usual now. I crash into things with regularity. We generally have laughed together if you have been an observer to these mishaps. But inside my mind, I am not laughing...I am nervously trying to mask the alarming manner in which my legs may suddenly become foreign appendages to me. You are not witness to the bruises on my legs because I do not want you to see the contusions and question or worry about me. I have never wanted your "worry"...only your companionship.

My vision is changing as is my ability to immediately recognize your face. It is true...I may have known you now for several years, but in my presence, my brain may not receive the signals from my eyes in the same manner and quickly process who you are. It is not because I no longer "know" you. It is because there is what feels like an interminable amount of time needed now for my brain to recall and distinguish things I see. If I walk past you and I do not acknowledge you, please do not immediately believe I am ignoring you or simply being rude. I honestly may not recognize you until several seconds AFTER you pass me by.

I remain in a constant level of pain. This causes me to feel distracted quite frequently and, to be quite honest, more irritable than usual. I do take medications to assist with this pain, but the pills are often too strong for me to tolerate during my waking hours, and I am left to either tolerate this discomfort or be too medicated to function fully and safely in the world around me...most of the time, I choose to tolerate the pain. I do not tell you this part of my story as a means of "one upping" any ongoing physical discomforts you may also be experiencing. I do not wish this type of pain upon anyone nor am I trying to invoke sympathy from you. I am merely telling you this so that you might understand it is there for is now, always there.

I have much greater difficulty controlling and regulating my affect. This again, is not to be confused with an idea I may be depressed. Sometimes, things that would normally NOT be funny, cause me intense laughter and I try very hard to control this because I recognize THIS symptom of my MS is NOT socially acceptable. But, it IS there all the same...and it creates great embarrassment for me. Likewise, so does my inability to control my tears. I can now begin crying for no real apparent reason and I will often hide away from you when this happens because I do not wish to alarm you. I am not necessarily FEELING sadness when this occurs. It is a misfiring in the frontal lobe of my brain that creates a false sense of emotion. And I, too, struggle to separate out the physiological aspect of this phenomenon from a true, emotional component. As confusing as this may be for you to observe, it is far more confusing for me to explain to you. And it leaves me feeling out of control of the most basic aspect of my emotional experience of the world around me.

I sleep very poorly due to pain and most likely due to generalized anxiety this pain creates. I will often tell you in jest that I either do not require as much sleep as you do to function or I will use my work hours as an explanation for emails or even phone messages you might receive during hours a "normal" person might sleep. This also contributes to my severe fatigue and is something I struggle to regulate with medications and other alternative therapies. If I mention to you that I am "tired", it is because I am physically exhausted...not simply bored or disinterested in some portion of my awake hours. Sleep, and what few winks I can catch of this elusive experience, is extremely important to my functioning and I now might be found "napping" during the day when I can. I hope you will not confuse this with a sense of laziness as I often label the response. It FEELS disrespectful and "lazy" for me to nap through your phone call and not answer, but I do not want you to stop calling me because you repeatedly are unable to reach me. I hope you might grow to understand, and thereby assist me to understand, that sleep has become as essential to me as food or water and I MUST obtain as much of this as I can to replenish my nervous system.

On any given day, I may experience a worsening or a grateful lessening of any of the above symptoms. You may, in fact, one day see me limping or dragging a leg in pain and, the very next day, see me walking just as a "normal" person might. It is not because I am somehow "faking" a symptom one day or perhaps even "allowing" myself to experience a symptom I might otherwise be able to PUSH myself through. Quite the contrary is true and it is the unfortunate nature of this disease. As surely as it is confusing and baffling for you to comprehend the WHY of my experience, it is equally as frustrating for me to grasp any sense of clarity in my day to day functioning. I may one day complain of numbness, or dizziness, or pain in an area of my body, or facial tics, or eyelid spasms, or incoordination, or have visible tremors...and the very next day, this symptom may have abated. This frustrates me greatly and, although I *should* be thankful the experience has passed, I am actually left feeling angry it ever surfaced in the first place. And, I feel embarrassed and "silly" to have bothered you or anyone else with my complaint at all.

Throughout all of these gradual and recent changes in my health, I have silently remained in fear of the unknown. I have not wanted to worry or invoke sympathies by telling you this...that is true. But I have purposely not disclosed this information to you because, on a very basic level, I did not want to admit to myself any of it is real or has been occurring. I have found myself pensively laying awake at night in anxiety, worrying what the ramifications of these physical changes may have upon my ability to remain gainfully employed, how I will continue to physically and emotionally survive if I can no longer participate in an avocation I truly enjoy, and I have cried many tears of anger and grief by myself. I have consciously placed myself in a status of "aloneness", which has provided an end result, of feeling alone...and this has neither been productive nor useful to me. I have contemplated my own mortality and silently wished that, if I become rapidly "disabled" to the point I no longer feel I am a productive member of society, that Death will take me silently in the night...that whatever gods or higher powers or spirits might be in charge, shine a face of empathy upon me and let me slip peacefully away without fanfare or loss of dignity. I have contemplated LIVING with my steady decline as surely as I have contemplated DYING as a result.

It is with great humility and extreme vulnerability I write this letter to you. Because I can no longer expend the energy required to smile and pretend with you that I have not and will not continue to experience further progression of "disability", I place these words upon the page. It is because I owe YOU as much as myself the freedom of honesty in this experience, that I type these words. It is because, throughout these past few months, I have slowly begun to comprehend the notion there is strength in vulnerability, I share these most deeply guarded secrets of myself.

And finally, it is because my relationship with you, if lost, would be far more traumatic than having a leg severed from my body OR losing the functioning of my mind...this being I call "me" would be forever lost without "you".




Spaz Attack said...

Hey Babe
I'm right here with ya. Your symptoms, angst, emotions, fears, denial, anger and all you've related are part of my life, too. It's true a person cannot fully comprehend a problem unless he or she has dealt with something similar.
It's been difficult for me, and my friends, to see me turn from a "can do" person to a "I can't." I'm still in denial over that and because I still push myself when I can I'm in tremedous pain (like collecting rocks on my property to build a rock retaining wall -- a project started two years ago that normally would have taken maybe 3 weeks while I also worked full-time). Who really knows pain is always there and will always feel unbearable.
Friends have had difficult time understanding why I no longer hve the energy to talk, or even listen, to phone conversations.
Last week one of those friends was feeling extremely ill and too drained to talk. (even though she'd called me). I wanted to say, "That's what I'm feeling all the time." but I didn't. I'll bring it up when she is feeling better though, because I WANT my friends to have a sense of the pain, extremly limiting fatigue, loss of identity from having to quit a job I loved....They do try. I want my friends to have a sense of empathy because I need them, just as they need my help in dealing with their own problems.
An ex-coworker was taking a couple months off for health issues 6 months ago. He looked great. Very healthy. I asked about him yesterday.
Was shocked to learn he died of cancer within a month of taking a leave of absense. Blew me away. Such a nice, loving family man. Yet, I was jealous his life was taken so quickly because with MS I feel sentenced to a walking "death."
I HURT. I too have conitive problems, will mix up identities or not recognize people at all. The list goes on.
So LD...just lettin you know we are in this together. United we fall :-)
So who loves ya BABE --your PEEPS do(LOL)

Spaz Attack said...

I looked at those Baitulos mugs and was so excited to see you have A MUG DESIGNED AFTER you!
HEY pEEPS...check out her mug at

(sorry I'm too poor to buy it though. I'm trying to follow Suze Orman's advice by not spending $$ on "I wants," just on 'I need'.

Spaz Attack said...

Of course I had to share that link to your mug on the Healthtalk site! Be interesting to see how many hits Baitulos gets for your mug.

Unknown said...

I really hate what this disease is doing to my friends.

Your letter could be written by any one of us MSers, but not as thoughtfully or as well. Thank you for putting into words what many of us feel and experience.


Tricia said...

Your letter helped me understand my husband a little better. Especially the part about desiring to be a part of things but not having the energy. Sometimes I think he's using the MS as an excuse to skip something he doesn't want to do, but I know he is tired all the time and I need to cut him a little more slack at times.

It is hard when RRMS turns into RMS - just the relapses and no remissions in sight. It happened to Pete too and he has now given up hope of any recovery. Thankfully for him/us the Tysabri seems to have stopped the relapses for now. And I pray for the approval of the new drug that is showing promises of healing the brain. How wonderful would that be?

MS is a cruel disease. Keep fighting it Linda!

Lisa Emrich said...

Words fail me for a proper response, so I'll just "ditto" everything Shauna said. XOXO

Jen said...


I can't even read this without bursting into tears. I do have advanced PMS right now, but seriously I am so beside myself when I read about other people's emotional and physical pain. When I am at my worst (usually in June), I can't even find the words to express deeply what I'm going through. Your expression hear is so honest, beautifully written, and clear.

Vulnerability is essential in order to make a connection. I'm gonna be bold and vulnerable and reach through my monitor across the country to grab your own hand, if that helps...

Thank you for being so open and know that everyone with MS who comes here understands and accepts all of this and will rally around you because we care.


Unknown said...

oh,...I hate what so many diseases do to so many ......
thank you for allowing us to share in yourlife with you....

Miss Chris said...

Thank you for sharing this with us.

Kimberly said...


I cried when I read your letter. Even though we will likely never meet I consider you a friend. A friend who is fighting MS with such courage and grace. Keep fighting. Keep writing. Keep being honest. Know that while I may be miles away, I am fighting the fight right beside you.

Anonymous said...

As one who is newly diagnosed (this year) and mostly asymptommatic, you express all of my fears for my future.

I already have learned that every healthy day is a gift. I wake every morning and take inventory (to make sure everything is working) and then move on with my day. I worry when I won't be able to move on. I am the primary "breadwinner" in my family too, so there's that HUGE worry if I let it.

All I can say is hang in there BC. You are in the thoughts and prayers of many of us!

Bubbie said... said it all. you said it well. thank you. hugs

Jeri Burtchell (TickledPink) said...

It's times like this I wish we were all not just cyber MSer friends, but in real life too because you need a great big hug and a good cry with people who know what you mean.

This is a scary journey we are all on, and when folks like you and I put a funny face on for the world to see, often times it is to mask the fear within.

Here's a big ol' cyber hug for you, my friend. (((((hug))))) You are the reason I came back again and again to the blogging world and just kept plugging away. Your little ray of sunshine brightened my dark days.

You can't possibly know how much you mean to us, and to read your sad letter makes my heart just break in two.

Damn this disease.

Denver Refashionista said...

I'm with Jen, overwrought with PMS... I too am sobbing when I read this. Let me also say all is not lost, you are clearly brilliant and you're an amazing writer. Hang in there.

karen★ said...

what a beautifully written post. as a fellow sufferer of ms i can relate to so many things that you write about. i appreciate the honesty that you share...especially the "strength in vulnerability." thank you!

Spaz Attack said...


Can you tell by all these comments you've touched a great many people in a good way?? You have so many gifts -- and such a valuable vocation.
Passion for life, your "people" and your work is a wonderful attribute you possess. Is there any way you can balance your passion and work so that you can lessen the stress? I know the adrenaline junky in doesn't want to, but since the job stress seems to be aggravating the MS beast within can you work for a different company or office that isn't such a high stress, crises atmosphere? An 8-hour workday, 5 days a week would be gentler to your body. The idea of change is scary, isn't it? Do you think it'd be worth a try in order to stay a part of the working world?
Or can you take an anti-anxiety med to help your body not be so reactive???
Also, I speak from experience when I say the cognitive problems DO get better with more rest and less stress
Sorry to keep throwing suggestions at overactive mind in a SPAZ is such a turn-off to the reciepiant, ain't it?

Spaz Attack said...

umm LD. Remember the link to your blog on Healthtalk? You have some blog comments on Baitulos.

Unknown said...

Trevis here.
I don't think I've ever read it better "put". You're my sister from a different mister and I SO get what you are saying. In opening up and offering to be vulnerable, you actually showed your immense strength! I applaud you and admire you.
We're always here if you need!

Weeble Girl said...

I could copy parts of that letter and use it myself. I didn't read the other comments because I am so damn fatigued now. I couldn't find my car parked right in front of me yesterday. It's hard to say that MS is winning at this moment.

Still adore you and the blog though,
Hugs, Weebs

Diane said...

LD: Shauna said it best - " Your letter could be written by any one of us MSers, but not as thoughtfully or as well. Thank you for putting into words what many of us feel and experience."

I've actually saved this letter so I can reflect on it when I feel the need to send out a communication like this to friends or family in the future.

I wish you the best. I'm thinking of you.

Tippy Topple said...

Incredibly put....**hugs to all**

Anonymous said...

Wow! Thank you for your post. You so eloquently put in to words what I've been trying to explain to my friends/family for years.

Natalie Ford said...

Thank you so much for posting this! You and I seem to have very similar symptoms and disease-course, where any of us are similar.

I would love to copy/paste this to my livejournal ( with a link back to this post, if that would be okay with you!

Natalie Ford said...
This comment has been removed by the author.
Natalie Ford said...

I am sorry that I had not yet seen your new blog post. I am so behind in reading right now. I had subscribed to this post so that I would get an email if you posted a reply comment to my comment here. ;-p

My re-post of this post:

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