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this is a tough subject--I havent spoken to ANY long term chronically ill person who hasnt thought of whether it would be better for those around them if it would all be over!! there are 2 sides--those that feel that staying with this earth no matter how hard it may be on yourself and others is NOT selfish but gallant. After all, the lessons to be learned by everyone is a blessing. I know my kids wouldnt have grown up as resilient and understanding of others infirmities had they not had spent the last 18 yrs with a variously ill Mom!! Theyre self sufficient and can cook and do laundry etc. I have a few friends whose kids in early 20's are helpless--yes I know we can have kids learn those things and still be healthy BUT when a parent has an illness it becomes a necessity and the kids automatically do it. There is some resentment but not lasting and besides what teen do you know who hasnt balked at emptying a dishwasher?? the 2nd side are those ( like my sister) who think that hanging on and fighting IS selfish. She tells me all the time that I shopuld either check into a nursing home or simply stop all meds and " let nature take its course" why??? well, even tho in the 10 yrs Ive lived 20 min from her home and literally ONE MILE off the road she uses to get to work, she got groceries TWICE and she picked up meds for us ONCE--thats in ten years folks!!--even tho it has "cost" her nothing in inconvenience or money--she still feels that it is selfish for an ill person to expect support and help!!! and the irony is her wife is stricken with MS and will very soon be needing a lot of that help--know what they did?? made written living will stating that the wife will go to a nursing home so as to not be a burden on my sister or others!!!she will leave their now 9 yr old girl and run away so their lives are "easier"!! Now to ME that is the epitome of being SELFISH--that my sis would send her own S.O. and her own sister (me) away like lepers just to avoid the inconvenience!!what if their child wants to be with her, despite her illness?? no one wants to lose their Mom...even if that Mom needs some help to be there. mys sister has even gone so far as to try to get my kids to agree with her--and my daughter with whom I had a very close relationship with ended up not talking to me for months this past winter as she spent a day with her auntie and came home with " its not fair to my life that youve been so ill for so long and Im not going to have anything to do with it anymore--I dont want to hear about your Drs or your day--if you dont want to be well badly enough that you heal, leave me alone..Auntie says that I deserve to have a life unburdened by your illness and I know its psychological--Autnie says if your heart is opk at some Drs appts then how come home alone some nights it isnt?? you just want attention" this is all based upon my sister's gospel--that anyone would heal and be well IF they wanted it badly enough--and hence if theyre still ill, theyve themselves to blame and deserve nothing but a check to a nursing home to insure basic food and bed and no more!! Hopes of her not being "blood" and possibly adopted are always squashed by my parents assuring me that no thats not the case ( darn) and while she was hit in the head by a swing and fell afew times too-I dont think thats her problem!! so where do I stand??? well yes Ive several times had thoughts of " what am I doing to everyone and would they be better off if I gave up" but then too I come back to: Im the only one who truly knows what Evan is going thru having lived it as well..and the only one truly on his side. Also if this is the challenge G-d has given me, who am I to escape it--rather shoudlnt I learn from it and bear it as best as I can?? Plus what if Im the reason for OTHER's --to learn from--whether from ym own experiences as guinea pig or due to my knowledge or even just due to another weaker person saying " if she can get thru 18 yrs of this hell I can too" and then Ive saved that person too!! and mostly--Ive got to be here for ME. I deserve whatever life I can get..if its from my couch or bed, so be it for that day...Im still there able to hear on the phone that my older son has his master's (finally)--able to enjoy the picture my neice drew for me able to be dragged 2 yrs ago to Ohio to SEE my daughter graduate with 2 degrees with honors even tho I needed to be pushed in a wheelchair--dont I deserve that?? why cant I allow myself the littlest pleasures?? even if that means a few are inconvenienced?? took me 4 years before breaking down and getting a hadnicap placard for the car I cant drive--so when Im driven they can park closer and maybe on some days not use the wheelchairs!! Prayer is wonderful for those who find solace--for me it often helps--for some I speak with it makes them feel worse somehow, so I tell those to stop--and do what gives them peace. I cant tell anyone that either choosing to leave this world or staying is selfish--BOTH decisions are equally valid if done for valid reasons. I can see why one of my relatives chose to stop all machines after decades of serious illnesses and pain and having no joy anymore--living in a hospital and unable to swallow water ( they turned it into globby gel) etc..I dont for one minute think she was selfish leaving us!! Jaime I think what your hubs was saying is " I understand how hard it is for you, I admire your courage and dont keep fighting because of us or guilt, keep fighting becauise YOU want and need to be with us"..I am impressed with his maturity and his love for you!!! its so hard to tell someone you love " whatever you decide, I understand" I think he wants you to fight to be well, but for YOU ( not him or even the kids) and he is very wise--thats is the only reason for which such a fight works!!He was also trying to say he will be ok with whatever happens so to please use your energy to get as well as you can!! and btw 2 months ago after a long talk and after my own Dad ( the kids' Pops) told my sister to butt out of my life and my kids' lives and that if she weasnt going to be supportive she should not be anything at all--my daughter and I started speaking--and we arent yet back where we were but with time and G-ds help maybe we will again be as close as we were!! Now that she is 23 and beyond the teen stages and we no longer dislike each other we can go back to bulding a firendhsip that started when she turned 19!! Jaime you are truly belssed--this horrid illness has given you the chance to see how much your hubs loves you and supports you--many dont ever get that chance or get to have someone like that in their lives!!! Not a bad tradeoff for the daily horrors we all experience?? wow, thanks for the chance to express this Finette |
Thank you for the reminder that God gives us only what we can handle. The last year has been crap but I am glad I found a doctor who thought to test for it. My kids are 8 and 10 and have learned to take on more chores this year. This "lyme" stuff really is just plain aweful. I find that it is difficult for others to understand. If you look fine on the outside how can you be sick on the inside? (this is how I think others think of my illness. I have fair days and I have bad days. I go to work on the days I can actually get myself going. I work as a physical therapist in the school district. I love my job and I am struggling to work 10 hours a week. Sometimes this road seems like there is not an end. Idid not realize when I was diagnosed in Jan.2008 with Lyme how it would affect my family. Thanks for the encouragement.
