A long time ago I was forced to let go of the idea of what my life should look like. I’m learning to forgive myself for what I can no longer safely do alone.
We had to recently evacuate New Orleans due to the threat of Hurricane Isacc. For those that don’t know, New Orleans is below sea level. Which means that hurricane strength winds and flooding can nearly demolish the city in minutes! This particular hurricane posed a unique obstacle in that it was moving very slowly across the state of Louisiana. The same levees that failed to secure New Orleans for hurricane Katrina a few years ago, held up this time, but the suburbs instead took the brunt of the storm leaving many homeless yet again. The subsequent impromptu evacuation shook my new fragile foundation.
All this to say that, leaving my modest but very accommodating surroundings was necessary, but hard to say the least. A few days after, the meat of the storm had passed; I actually left on a trip with my family (mother, father and sister) as previously planned. At first I thought it would be a good idea to give Tommy, my husband, a break from his routine responsibilities caring for me. Later, after I remembered how cumbersome even the simplest activities are for me, I was humbled but thankful for my family.
For example, my dad had to help me to the bathroom. My mother prepared my meals for her 37 year old child. My younger sister literally carried me up the stairs to her apartment. She helped me in and out of the tub. On my part, I just had to let go of who I use to be once more and accept help. A little thing that continues to forge new paths for me. I’m changing right before my eyes.
This supposed big sister has transformed into someone unimaginably different. Hurricanes tend to do that too.
Glad you are safe & sound. It is hard to accept help, but I’m sure your family enjoyed the time together.
I was in one hurricane during a vaca in the Outer Banks. One was enough—that’s why I live in Ohio!
My Odd Sock, You’re right I think they enjoyed the time together too.
welcome back! how ironic you were on vac, so were we. We rented a “handicapped accessable” home that wasn’t. there needs to be a STANDARD to define “handicapped accessable” because unless you or a family member is handicapped, most people are clueless and they think a grab bar in the bathromm equals “handicapped accessable”.. the home we rented had a SUNKEN LIVING ROOM! an 8 inch drop! never once did this fool mention that it was sunken after numerous discussions/e-mail abt my disability, being 24/7 in a scooter, yada, yada, yada! my husband had to take me into th BR abt every 2 hrs (we didknow abt that) but mt scooter would not make the turn into the master bedroom (small tight hallway). luckily we brought the “baby”scooter (very uncomfortable) which was able to manuver it, but still, my hubby had to transf me fr one scooter to another to get into the bedroom. It was nice to get away, but even better to be home. I didn’t face that hurricane head on, but going back & forth all week, my body feels like I did! Again, welcome back Nicole.
KIM, It sounds like you had an adventure yourself. I think they do the bare minimum.
This is like reading my own writing!!!!!
Kshanski,
Did you have to leave too?
How frightening that you had to experience two hurricanes in your life! Glad you’re ok and ready to move back. I know it’s so hard relying on others for the most basic of our needs, but a friend once told me that we ‘grace’ others when we allow them to help.
Peace,
Muff
Muff, I’ll have to remember that one.
When I was growing up, I used to love to travel and stay in hotels. In the hotels, we would have cable and maybe even HBO! I said to myself, “I’ll know I’ve made it in life when home is more comfortable than the hotels I stay at when I travel.” That this is true in my 30’s is a sign to me I need to be thankful.
It’s amazing how nice home is. Sometimes leaving for a short period of time really makes me appreciate all I have at home.
I’m glad you had family you could visit and rely upon for help. If my kids need help in their 30’s and 40’s like you describe needing, I hope I can provide it. Hope you have a good week and manage to return to an undamaged home.
well lived, I have returned home and things are fine. Yes, I am truly fortunate to have such a supportive family. I wish you the same!
it’s such a pleasure to read this blog every Tuesday. I have to say, it’s the best thing I’ve found since my own diagnosis. It really helps in many ways. Thank you so much.
Dominic,
I am so happy for us both.
Because you guys give me the motivation to keep on!
Nicole, I am happy you could relinquish some control to your family. We have to depend on others and I detest that. I have always been in control and now I have others drive me to where I need to go. It is a horrible but I have no choice. I rely on my best friend and husband for rides but it puts a burden on them and I was always the one who drove before MS. Giving up control is very hard for me but I guess I will do what I have to do to get by.
Lisa, Hard but necessary from now on.
Hi Nicole. I just got the official Dx of MS last week after 16 yrs of symptoms that no one in the medical community could figure out….so frustrating. Receiving the Dx somehow did not provide the anticipated relief I was expecting. I have been silently reading your blogs and the comments of your readers for several months now. They have been more informative than any information you receive from the doctor’s office. Thank you and all of the fellow MSers for sharing. Nicole, I too am a RN, who had to retire in May this year due to cognition and fatigue issues….just not compatible with the profession. I am from New Orleans…living now in Las Vegs, NV after evacuating from Katrina. I so understand all of your challenges. With the change in my health status, we were considering moving back to my ancestral home, NO. But Issac quickly killed that idea not just because of the MS but my husband and I are just too old to deal with the inconvenience of living in SE LA. I think we will go back to to
Tucson, AZ. To continue to work on, as you say, my new normals (we lived there for 5 yrs right after Katrina). The desert heat is no joke for MS, but I am a short drive from cooler places for respite. I could go on and on about my journey….but you all know the drill. I look forward to contributing to the blog…..I am ready to get off the bench and get in the game. Thank you all for being my only support in an otherwise lonely place. Kim C
Kim, Thanks so much for sticking with me.
You’re right it can be a lot with this. Guess what I use to
work in the ICU at Desert something in Las Vegas too!
Yes Isacc has been rough, but still not ready to leave the city. I just love it do much here.
Nicole, maybe Desert Springs Hospital? You know they say everybody in our neck of the woods is related…..Cher, seems like besides MS we got a lot of kinship. KimC
Kim C, Yes that was it! Man that seems like so LONG ago! Yes, you are right we are kin.
i read your blog regulary. i just want to tell you that there is a future. i know, ms diagnosed at the mayo clinic in rochester, minnesota in november 1976. still alive, still —well–stay-on–be with it, mcc
Mcc, Thanks for reading and nudging me to keep moving on!
Hi Nicole,
Glad you could avoid being involved in the hurricane. Living in central Florida, I’m all too familiar with such hassles and potential chaos, especially for those of us with serious medical concerns. I’m also greatful that your able to get back to posting and look forward to reading them every week. I think an earlier comment regarding your site being informative is right on and I find it to be so because what you write about is real! You are living the content of which you write about and it can’t get much more relevant than this. I think when we can read about others real life experiences and the strength that is exhibited in most cases to handle them, it is there that we find hope. Hope that a life with MS is still life, maybe not the one we envisioned but life none the less. So thank you once again for providing a source of hope to others living with MS.
It’s been about 6.5 years since my diagnosis and this is the first time I’ve felt capable of participating in the annual Walk for MS! I’ve got lots of support and my change of diet has made remarkable improvements to my stamina, so Lord willing I’ll make the mile walk in February 2013 and the preparations must start now. So thanks again for being a source of hope for me and the others that read your post regularly, you are a blessing to the MS community.
Your friend Tim
Tim, Wow! Thanks for the awesome compliment. Congrats on the walk. You’re right a life with MS is still a life. I have to keep reminding myself of that too.