bathroom hell

I am living in bathroom hell. I had a leaky ceiling for the third time in two years. By now the waater is raining down in three places and the bathroom floor is lined with buckets. If I sit on the toilet, the gook drips on my head. I am very afraid that this is germ-laden sewage. I wrote a letter to our new management company and they are on the super’s back to get this done. I don’t like to play the ALS card, but this time I pulled it right out of the deck. And Sunday, we were stuck with an already-scheduled open house and had to show the apartment with the water damage and part of the ceiling missing. And now, I have no ceiling over my toilet at all and the super has to go upstairs and rip apart the lady’s bathroom to find the leak and try to patch it up and then he might have to replace pipe.

Tim, my realtor has been helping me by calling the management company and Jeanellen offered to make whatever phone calls I need too. Tim has been a huge help and he also brings people over during the week to see the place too.

I have been slowly emptying out my storage space in the basement and throwing out almost everything. It is nearly empty and next Judy (my Jewish Federation volunteer) and I will tackle the closets. I am dismantling my photo albums and keeping the few that I want to scan.

Yesterday I had the most fun I have had in a long time. Jeanellen picked me up and we went out to North Babylon High School, where Jeanellen’s mom worked, and did a presentation for Ride for Life and signed up about 100 student volunteers to walk with us and to collect donations. Then we had a late lunch at a pub and then we drove into Manhattan for my MDA/ALS support group, where Jeanellen spoke about the Ride, and then Jeanellen drove me home. I was exhausted but Jeanellen and two teachers from NBHS, who were friends of Jeanellen’s mom, joined us and we had a blast. They were all so close to Jeanellen’s mom before she died that they consider it their mission now to help me out too. And, since they are not freaked out by ALS, they were perfectly relaxed around me. And so it seems to be going; the majority of my support system has become those from the ALS community, who aren’t nervous around me, know I have just a little time left and know that I need to have some good laughs before I go. They know to get me my writing board when they see me struggling to say something. They include me in their conversations and wait for me to type out my lines on my Mercury talking computer, and know when I am getting tired. I never felt on Monday that I was an observer; I felt included.

And I am accepting the myths that are just not true -- the ways everybody thinks happen when someone gets a disease like ALS. Friends and family do not rally around and people say things they don’t really mean because they don’t know what else to say. They really are NOT going to have you over their house for Passover and they aren’t going to come pick you up for days at the beach or trips to Central Park. They say they will because they don’t know what else to say. They can’t tell you “Listen the friendship is over because I don’t have room in my life for someone in a wheelchair” or they don’t realize that getting you in and out of the car would be so difficult. And they certainly never thought they would have to see you push food around your mouth or take two hours to eat a meal and get half of it on your shirt. And after the first invite, there might not be any more. Unless, of course, your hosts just happened to have had a relative with a crippling illness and know how it is. This is not an attractive disease and comes with no hope. They know you are dying; there is no hope of surgery or chemotherapy and no one likes to be reminded that some diseases have no hope, and so they feel helpless. And lastly, nobody wants to look at you and know that it could have been him or her. So I am grateful for the people who are around, including new friends I have made, and for the use of my hands so I can still type. And I am thankful that nobody makes those empty promises anymore. I have found things I can do alone and one day when I am at the end, bedridden, I will have my audiobooks and The Amazing Race and all the other television shows I have gotten into.