Posted by: sistermom1 | May 4, 2010

Renegotiations (Part II)

In an earlier post I wrote recently about how MS has forced me to re-negotiate my relationships with everyone in my life.   How being officially disabled and wheelchair-bound has impacted my ability to meet other people’s expectations of me, and how that has affected me.

What I have come to realize is that the most important relationship I have to renegotiate is the one I have with myself.  Accepting that I cannot do what I am used to doing — and what I have defined myself by doing in the past — is the ultimate renegotiation for me. 

I have learned that for me, knowing and accepting that at least right now, I am unable to meet most of the expectations that I have of myself is one of the most difficult parts of this experience.  Things really are different for me, and I need to come to grips with it while I continue to work to change it.  Even with the physical pain that I am in most of the time, and the fact that I can’t yet drive anywhere on my own (a major issue for my strongly independent nature), and that I cannot do anything with or for my children on my own (I really hate that!), I am still me – and THAT is all I need to be to have a great life and to make a real difference in the world around me.

As I have been considering this new reality, I ran across a passage from one of my mentors in life, Daisaku Ikeda.  In it, he shares:

“Prayer is the courage to persevere.  It is the struggle to overcome our own weakness and lack of confidence in ourselves…Prayer is the way to destroy all fear…It is the revolution that rewrites the scenario of our destiny.  Believe in yourself!  Don’t sell yourself short!”

Being myself in every way possible, I am determined to enjoy my life as it is – and enjoy myself in the present regardless of my current physical limitations.  I need not worry about the standards I have set for myself in the past – I need new ones now, and I am developing them as I continue writing this blog. 

I will keep you posted from this part of the detour….



  1. You are an amazing woman! Thank you for this blog, and giving me the inspiration to continue on with the journey of life regardless of where it takes me!
    You have touched my heart!!

    Tracey Atkinson

  2. Dear Diva On A Detour,

    Here’s the thing-the old you is gone and is never coming back and the new you will change from month to month-always fluid! Don”t lock yourself into standards of performance or expectations that are based on the old you or the ever evolving new you.Simply define the day and your expectations, when you wake up each morning. Then begin to take small actions toward the plan for the day.The plan can be as simmple as;”I am going to get up today” and after meeting that goal, then define the next action, like; ” I am going to get dressed and blog today”, etc….

    There is something about us handicapped folks that makes us believe that we have to be so grateful for each and every act of kindness, help ,assistance and love. Get over the guilt and accept that you are worth each act of love, kindness, assistance or help that you receive.

    I say this to you as a survivor of 31 years with MS and I have never had family and friends to assist me through my life’s journey with this diabolical,debailtating, damned, confusing and conflicting disease. As you know, I never told my family and friends ( except 2 great girlfriends) that I was diagnosed with MS for the first 10 years.Back in the day, we didn’t have all of these wonderful support groups, blogs, seminars, and books about MS.Who knew you were suppose to “reach out”for help ?? Crazy but true and that’s another story for another time! We both know that just deciding that “you are going to get up and get dressed” is an action move/decision that may take you several days or even weeks to accomplish or actualize. Don’t sweat the stuff you can’t control.On the days when you cannot get up -just reach over to your bedside table and grab one of the books you have been planning to read someday . Accept that when you are having one of those dreaded deep,deep fatigue “sleeping sickness” kind of weeks
    that the only thing you can do is go with the flow of your body and that might mean and you have just enough strength to get up and make it to the other side of your bed and are forced to get right back into bed and fall immediately into a deep sleep.No matter how amny times you try to explain this “sleeping sickness” fatigue business to folks, they simply cannot grasp or accept
    bizarre occurance. The closest they will ever come to experiencing this type of deep, deep fatigue that takes you into unchartered “sleeping sickness” days and weeks, is a very severe case of the flu and even then folks do not remember the actual physical act of being temporarily disabled by something like the flu-so don’t waste energy and guilt trying to get them to understand- It is what it is and move on.

    Remember that mother’s have a particular hard time accepting this disease, when their daughters have MS, especially when their daughters are diagnosed in their late 30′ and 40’s.The reason for this is their very deep fear that their daughters will not be able to be there for them as the mother reaches her senior citizen years!Mother’s cling unconsciously or otherwise to the natural order of things where their daughters will be around and available to assist them in their golden years, especially mothers whose spouses have predeceased them.Most mothers never realize how angry and stunned by fear that they are on their own and cannot count on their daughters to help care for them because MS has robbed their daughters of a normal life and mobility!! This fear is very deep in our mothers and they will get quite “snippy” and “controlling” and simply angry with a daughter with MS because once again the mothers are taking care or assisting in the care of their daughters and the mother’s feel there is no one there for them-no one to ease the journey of the “golden years”!! So mother’s unknowingly put their daughters through some serious “hoop jumping” and need for therapy to be able to say to very dearly loved mother’s:”No, I can’t do this or I can’t attend this event with you or no, I’am not lazy and I would love to be able to get up out of this bed before noon and hang out with my kids” or no,I cannot do what you want me to do-not because I am stubborn and want to hurt you but simply because I can’t-my body wil not let me do what you want or need me to do as your daughter” or Mom don’t make me beg, if you see that I need something and you are able to help me and my family-then just do it-just help me-without holding it over my head or trying to guilt trip me” or ” simply being able to say NO to our mother’s about anything””! Just remember their fear and forgive them and their drama!!Mother’s just expect their daughters to be there for them later in their lives and they will necessarily be accepting( even when they say they understand and they do understand MS “intellectually” but mothers WILL NEVER ” EMOTIONALLY” ACCEPT THE FACT THAT MS HAS CHANGED THE LIFE PATTERN-CHANGED THE NATURAL ORDER OF THINGS! Mother’s will fight like” mad dogs” to keep the status quo-know this and be ready to forgive them and more importantly-get out of their way! Fear of a “new unknown” grabs all of us by our personalities and can often wreck havoc – fear changes us all-the trick is NOT to become a prisoner of that fear!!

    I know this may sound cold but with our mother’s sometimes we have to take some “offensive action” like simply NOT answering the phone when they call sometimes-especially on those days when you feel emotionally vulnerable! Find a way to let your mother know that;” you know that she is fearful” and angry because you cannot be there by her side in the manner that she would like-doing the “golden years” together and that things will still be ok!!
    You can’t just tell your Mother to” get over it” or can you?? They will have to learn to accept that if you don’t show up for something-it’s because you can’t!

    We will have a whole different conversation about how our sisters and brothers handle their sister having MS!!! I will share with you this one little nugget of truth, that my brother always believed that I was just lazy and liked to spend all day in my bed, no matter what I said to him or how much informational materials about MS that I shared with him to help him understand something about the disease, until he got sick ( Vietnam War Veteran w/severe PTSD and Agent Orange exposure) and had to attend group therapy as a part of his wellness plan . He announced in his group session that he was temporarily living with his sister, who has MS and she is just lazy and spends a lot of time in bed and one of the veterans is that group session jumped out of his chair with anger/attitude and screamed at him ” that s— is REAL she is living” and she is NOT LAZY and” threatened to kick my brother’s a– right then and there in the session ,for being SO selfish and not understanding what it is to live with MS!! My brothe rushed home from his session and could not wait to tell me about his near physical altercation and his NEW discovery- that MS was horrible and that he now knew that I wasn’t lazy or ” faking it” and ironically, my brother wanted me to “go and talk to this veteran about my MS!! PLEASEEEEEEEEE!!!!MUCY EYEBALL ROLLING !!! I must tell you that I did write a thank you letter to that wonderful Vietnam war veteran, who has MS himself along with severe PTSD and a few other health issues -WOW), which I sent by way of my brother to his next group therapy session. I thanked him for being my “defender” and that he had my permission to go right ahead and kick my brother’s a— in group,anytime he felt the need and especially whenever my brother brought up me or my MS or any of my business in another group therapy session. It sure felt good to have a “knight in shinning amour” defend me against stupidity!!Incidently,my brother passed away last month after a painful extended illness and he told me one day;” I understand now” and he asked for my forgiveness for not understanding or believing me when I discussed with him the perils, pain and missed opportunities of living with MS”.We laughed about that episode in his group session with my “defender”!!He told me that my defender was 6’4 and weighed about 300lbs and that he was scared of that”dude”-sometimes a sister has to get respect in unorthodox ways.

    Also remember that just because you have MS DOES NOT mean that your siblings will become ” caring, selfless and non- jealous “angels”!! My motto about siblings, as much as I love mine, is; “expect nothing, so that anything they say, do or express that is positive is a BIG surprise and a GIFT” . .
    Finally, forgive yourself for having MS!!! Take life one day at a time-don’t complicate it with unrealistic expectations. Free yourself from unrealistic expectations- yours or others. You DON’T have to “inspire the MS world” with your wisdom and insight, although we are eternally grateful. All YOU have to do is live life with all of the gusto and love you can embrace! Learn to put your “independent self and your pride in your back pocket and sit on them”. Different times call for different strategies-try “assisted independence and REAL humility, with just a smidgen of pride of daily accomplishments


    • Hey LadyCrusader!
      Thanks so much for your thoughtful and meaningful message. I really appreciate hearing from someone with more experience managing all of the changes that this disease requires of you. Good luck to both of us!!!

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