It's a matter of trust...isolation is a powerful illusion

[DavidinKnoxville]

One of my favorite music artists of all time is Billy Joel. In part it is because I'm that old and in part it is because some things are ageless and I've found a lot of what he has sung about has summed up what I was thinking and feeling. In this past year since I began the journey from symptoms to diagnosis to learning to live again, I've struggled with trust. And the song, "A Matter of Trust" has played repeatedly in my mind. Now before you get too far ahead of me. I'm not talking about bad or good relationships with a significant other. I am talking about how passionate living begins shifts and what you have to do in the midst of it. I think that what has happened to me is a deeper sense of being able to trust.

My struggle has not been around trust but vulnerability. I don't have a problem wiht the act of trusting or the fear of being betrayed. I've had to trust a lot around some things that are bigger than me. My MS is bigger than me and it has been frightening. I've had so much stripped away. But when I have trusted, I've been reassured and the trust has been a light (sometimes timid and at other times bold) that my journey has demanded.

I have had to self-disclose repeatedly. This is not comfortable. I've talked about symptoms of disease and pain, not strengths. I've submitted to health testing, I've been poked, prodded, sliced, diced, imaged, biopsied, stuck, bleeded (you know the drill)... There's not much left that's private.

I have always like my privacy and quiet places. In part, it's because the worlds I created were safe. This is kind of odd when you think about it as I'm an extrovert in most things and love being with, around and in relationship with people. I'm sure that there's some deep, psychological mystery there... I learned that privacy and isolation don't always give us what is needed.

In the past year, I've had to trust doctors, nurses and other healthcare experts. My trust has not been misplaced. I've had a successful journey with cancer and it seems to been taken care of appropriately. This doesn't mean that I trusted blindly - they had to earn my trust. I used every bit of my intuitive skills, tough questioning and networking. Those skills I had. There was a lot of prayer, an outstanding counselor, a great nurse navigator and a skilled surgeon. The trust has not been misplaced.

With MS, my journey has been rockier. In part, it's because I'm having more trouble trusting myself. My body is no longer doing things the way it used to (surprise). How I understand myself has changed. I wonder at times how accurate my perceptions are due to depression, medications, fatigue etc.

In my journey to where I am today, my biggest struggle has been around a phrase that I resisted and did not like. It did become a big help. It's "letting go" (based on Mindfulness training). I had trouble with this. I could let go of certain things. But letting go of myself was troublesome. It was like "prying off dead, cold, stony fingers". I had to let go of something precious. The illusion that I could control things. I thought that my level of control defined me for the good. It wasn't a bad thing. But letting go would mean a new level of vulnerability that I needed.

I took a risk. In the end, it wasn't that bad. As a matter of a fact, the risking drew more people to me and me to them. Trusting brought me to a better place.

Before you take this wrongly, I'm not talking about trust that is stupid. Trust has to have some smarts about it - that's why I still like having my wonderful advocates, my questioning nature and a desire to test things out.

The vulnerability and trusting I have done has brought a healing to my dry soul and spirit. Yes, my identity has shifted. I'm David with MS. I'm also a David more able to trust others. I'm able to trust in God in new ways I did not know that I needed. I'm also trusting a community of faithful persons with something I took great pride in - taking care of me. My MS showed me that "taking care of me" is an illusion. It was a prison of razor wire and fences. Trusting brought new life and energy.

An MSer's tendency toward isolation is something that I observed and read about at the beginning of my journey. I did not choose that pathway. I believe it's time to leave that razor wire behind and to be freer than I've been before.

[jimeka]

Thank you David, it's what I needed to hear or read. My trust has been tested and was today as I fell down our stairs, thank God I am ok, shook up, but maybe alittle wiser. Everyday I am taught something new, so everyday is a lesson. Again many thanks for sharing, God bless Jimeka

[DavidinKnoxville in reply to jimeka]

Jimeka,

I'm glad you're ok. I'm glad that these words were meaningful to you. I agree each day has lessons. Honestly, I'm kind of tired of them....

I have trouble with going up the stairs. I've always been the kind of person to fall up stairs!

David

[erash]

Thank you for sharing your intimate thoughts. It's so good (and not so good) to hear others self identity is also impacted by MS. Wishing you wellness and happiness.

[DavidinKnoxville in reply to erash]

Thank you erash. I also wish for you health and wholeness.

[Ashirva]

Your ability to share your innermost feelings, your trials, your aha! moments shows how very trusting you are David. Keep learning! Keep teaching! Thank you!

[DavidinKnoxville in reply to Ashirva]

Thank you Ashirva. We're in this together!

[ynggal]

DavidinKnoxville, I enjoyed your post. Like you, being vulnerable is uncomfortable and scary. Especially to someone who was raised to be independent and self-reliant. MS is very isolating, but often I choose the isolation because it's one thing I can control. I can control the sensory overload...the noise level...how cold the temperature is...not being touched when the overload gets to be too much, etc. There can be a lot of comfort in that. What I do hate about MS, well, there are MANY things I hate about it, is the pity I see on people's faces and hear in their voices when I tell them I have it.

[DavidinKnoxville]

Yes. There is comfort in something we'd like to think we control. And, there are moments/times I need to be by myself. But those times are limited.

The one I have most trouble with is "you look good" you must be better. Arrgh.

Thank you ynggal.

[Sukie427]

I read your post with interest, DavidinKnoxville, because when I began to experience the full panoply of symptoms I became ashamed and embarrassed. As a litigator, and a small woman in a man's world, I was aggressive and bold. I had to be. I tried my last case in 2112 in federal court in Miami, and thank goodness there was no jury, just a judge. No 3" stiletto heals any more, but I refused to use my cane because I considered it a sign of weakness. Rather, I walked around the courtroom with what I had hoped was a non-noticeable limp, which became more pronounced as the trial went on, until the baliff approached me to get the evidence from my hand, rather than the other way around, obviously trying to help me out and thus my fantasy that my limp was not noticeable vanished into pixie dust. I won the trial, but felt humiliated nonetheless; my persona of strength and confidence was evaporating. Several months later, I stood in another courtroom ready to try a case that was to take a week. It was the morning of when the trial was scheduled to begin; we were to pick a jury and give opening statements that afternoon, then return the following Monday (it was Friday) to start the evidentiary phase. That morning we were simply taking care of many pre-trial motions which are fairly standard before any trial. As the judge entered the courtroom and the baliff ordered everyone to stand, I did, and immediately had to grab onto the underside of the counsel table to keep from falling. My legs just weren't cooperating. I also felt dizzy, and the pain began emanating from my hips outward. It had nothing to do with nervousness or uncertainty about the trial, as I had tried hundreds of cases over my 35-year career and this was simply one more. It was the MonSter, showing itself big and bad and there wasn't anything that I could do, no medicine that I could take that wouldn't make me foggy when I had to be sharp as steel. Back off, I kept screaming in my head, back off!.. But it wouldn't. It was an adversary that picked its own times and places to show itself, and it didn't matter whether they were convenient for me. And then I thought that there was no way that I was going to make it through a week of this. Thank goodness I had a trial partner, but he was no way near as prepared as I was, since I had taken all of the depositions and done all of the pre-trial discovery and knew the evidence inside and out. But I knew that I was not at my best and that that would not be helping the client, who was depending on me for one of the most important events in her life. I was just praying that the black holes in my brain wouldn't open up and start to swallow everything that I needed to know and do at that moment. Miraculously, the judge inadvertently and unknowingly saved the day. She granted a summary judgment for the other side, thus ending the case right them and there. And in doing so, she not only handed me an easy appeal, she also unwittingly gave me a reprieve. And when I returned to my office, I sat alone and cried, because it was then that I realized that my life as I had known it was over. The MS Beast had beaten me at the thing that had defined me for all those years. It had sapped my strength, replacing unbearable fatigue for my ability to be strong, and my confidence, as I realized that I could never appear in a courtroom again because the MonSter could and did strike at any time, and this time it had struck me right in the heart. It had robbed me of myself. My trial partner and I prepared and won an appeal of the judge's grant of judgment to the other side, and the case was remanded for a full trial on the merits, but it wasn't I who tried it.

I retired basically that day. I did stick around for a month or so, finishing up loose ends and such on all the matters which I was handling. And then I worked on living in a "new normal," trying to rebuild my life and discover who the new me was. Since stress was now my arch enemy, I tried to learn and find ways to keep it away. I began a regular exercise regimen, rode my horse much more often, and tried to be nicer to people. Eventually we moved out to AZ and I discovered something awful and wonderful at the same time; that I liked who I was becoming and that I didn't really like the person that I was. I began to appreciate life itself for the first time; the scenery, the stars that came out at night, the serenity and hominess of life in a small, basically rural town. We made new friends and began to engage in new activities that I would have sneered at before. I realized that my old persona wasn't very nice at all; she was cocky and arrogant, and dismissive of the things that had now become so important. She mistrusted people and wore an armor that few were able to penetrate. The success and admiration she had garnered were more important to her than the things that she now was discovering that she would completely overlook. Now I get up at 6:30 a.m. and go with others horseback riding on the mountain and national forest trails. I stare in awe at the beautiful colors of the mountains and the sky at sunset. An ice cream cone, eaten in complete haste and without thought never tasted as good as the one now eaten slowly and savored. I learned to turn those black holes in my brain into something else; a movie or a book once easily understood and then dismissed from thought as I left the theatre or turned the last page now became something to mull over, to puzzle out, and often to question.

Of course there are good days and bad days. Sometimes I cry for the person I used to be: a well-dressed woman in designer suits and crackling stiletto heels with a razor sharp mind who could slice and dice people with her equally sharp tongue. She was well respected, successful, and liked by most of her colleagues, many of whom were just like her and found her a formidable and worthy force with whom to be reckoned. But now each day is a treasure and a wonder to behold and savor, and when the MonSter is quiet I appreciate it that much more. On bad days I try to relax and maybe give myself a day of TV or reading. But I realized that I don't have to let this disease define or beat me. So I depend on a cane, or when the fatigue becomes too much I even use a walker, so what? I realied that novody cares! It doesn't determine or define the person that they see or meet. And I am no longer ashamed of the kinder, gentler, not weaker, person that I was forced to beomce. I am learning to love her. And that, DavidinKnoxville, is how you beat this thing called MS and not let it beat you. Isolation is good for bad days sometimes, but when they happen you do what helps you the most--meds, exercise, sedentary activities that keep your brain going--and you get up and out again when it passes, for as long as it passes.

Unfortunately, or maybe fortunately, no one of us knows where this journey of life with MS will take us. But at least for me, I savor the good days and even the bad, because at least I am alive to see the sun come up.

I apologize for the length of this post, but I just wanted to let you know that you are not alone in your feelings. They are what they are, but don't ever let the MonSter take you over. You still retain the control, and it lies in how you deal with the Beast and turn it to your own advantage. Best of luck on your personal journey; in this, we are all fellow travelers though we each have our own journey.

Best,

Sukie427

[SepFromWisco in reply to Sukie427]

Thoroughly enjoyed this post. Can relate it to so many ways, but unfortunately at the young age of 27. I graduated college at 21 and worked at a Fortune 500 company until diagnosis, working my way up the ladder with high ambitions & goals. This monster has deprived me of those aspirations but I am now in the process of figuring myself out and working on my reinvention. I know it will take time but I find that Im learning new things about myself every day and most importantly, taking the time to enjoy the small things in life!

[Fancy1959]

Davidinknoxville, hello it is Fancy1959. I agree If we are not careful, many chronic diseases tend to make the person affected feel isolated as our bodies turn into unresponsive strangers to us. To keep our lives somewhat centered I believe it boils down to our attitude. A simple phrase comes to mind to sum up my attitude. Don't focus on the negative and oh how I know firsthand sometimes how hard this is. Focus on the positive and believe me if you look hard enough you can always find that positive thread, no matter how small it is. In other words my glass is not half empty, my glass is half full! Try it, it really works! Pass it on........

[DavidinKnoxville]

Thank you Fancy1959 for your response to my post.

It is so true that attitude is huge. This post is intended to give voice to one part of my MS journey. I knew from my beginning that I did not want isolation or negativity. I've been weeding these things out. What I am trying to say now in my journey now is that my MS is a part of who I am, not who I used to be. I'm blessing that shift in my journey.

I love this conversation and look for more of them!

[Ashirva]

Hi David,

I was wondering where you'd gone... hadn't seen anything from you for days! It looks like you've got a lot of people rooting for you and concerned for your well-being! Count me in too!

This is truly an amazing site! I'm glad to be a part of it.

Stay in touch, okay?

Anne

[Hidden]

DavidinKnoxville, hello it's MSFighter welcome into this wonderful chat room. Your text certainly mirrored what so many of us have gone through especially during initial diagnosis. It's full of twists and turns. You feel lost, you feel alone, you wonder why in heaven MS chose you. Please realize you have found a safe place and you will soon feel like you are part of our family because we have all fought the same monster you have. If someone with MS tells you they've never been lost, never been afraid, never felt isolated, or depressed I will tell you they are probably not telling you the full truth.

Take a deep breath and understand that by simply voicing everything you have you have taken a giant leap toward conquering this monster. Become involved in our chat room and share your experiences both good and bad with other MSER'S. I guarantee you that if you talk to others, share Joys and share troubles, cry with people and laugh with people, you will unwittingly receive a therapy for your individual troubles far beyond that you could get anywhere else. Remember we are stronger together! And I would like to invite you to become our newest MS Warrior. We never give up and we never give in we just fight on. Fight on MS Warrior, fight on!

[kat0615]

My name is Kathryn. I relocated to The Sunshine State in 2008. I remarried in 2010. I was very social and outgoing prior to my marriage. I was officially diagnosed with RRMS in 1999. I think the marriage is my source of depression and shows as isolation.

I Am So Unhappy.

I have a husband who does not want to do anything with me so now I just do not think about much of anything out of the home.

I feel 10/10. Broke my nose on both sides and had to have 7 stitches close a gash over my left eye. Blood gushing down my forhead my husband took me to the hospital and left me. On our anniversary night a couple months prior I got into an and hill and was bitten all over. I had an allergic reaction but I had to drive to the ER and that is how I spent my anniversary night.In the ER alone. I have allowed my husband to still my joy. I can handle the MS good or bad.

My problem is should I stay or should I go?

[Jesmcd2 CommunityAmbassador in reply to kat0615]

Hi kat0615 welcome to our wonderful chat. Wish it wasn't because of this monster they call MS tho.

Sounds like your going through a tough time yikes. Only you can decide if you stay or go tho.

But you need to get out of the house. Have you looked into your local MS support group? They are usually pretty wonderful. And have great advice. Take a walk, if you can. Just do something you in joy doing. Make your own happiness.

How in the world did you break your nose ? Ouch!