On the Care and Feeding of those with Disabilities and Chronic Illness.

 I am disabled, living my life from a wheelchair. I've been in the chair for over 15 years, and dealt with all the things that go along with my disability and chronic illness. So, as I write this, I simply write from the point of view of someone who has "been there" and is still there. That is all I can do, write what I know, so I'm sure some of this will not fit other's situations, and some will be spot on because I've spoken with others in this same boat as we float along on the journey of life. So, please, bear with me and understand I do not speak for everyone, and do not try to!

It is interesting, some days, being a person with a disability and chronic illness. When it all first really begins, and family and friends are getting used to the idea of your new situation, they don't always know what to say or do, and that is natural. It is often times up to those of us who are dealing directly with the problem to tell  them what we need or don't need. After all, they aren't mind readers any more than we are (unless you are a mind reader, then, well... you already know what to do <chuckle chuckle>) But what I'm really saying is, everyone is hovering around, wanting to know what to do, sometimes in the way, but in a good way (and some get scared and make themselves scarce because they can't deal with it, sadly). However, as time goes on, and folks get used to the idea, things change, and that's as it should be. They get less anxious, more 'comfortable' with the situation, and they begin to relax. Unfortunately, that also sometimes gives rise to some of them deciding they know better than the disabled or ill person what they need! Unless you live in the body of a person who is chronically ill/disabled  you really do not know what they are going through. So, in the next section, I'm going to put up some scenarios that I've dealt with, as well as others have told me they have dealt with. Remember, this is not to chastise anyone, most especially not those who love and care for us. This is just, hopefully, to help educate some folks on what to do, and sometimes, what NOT to do. 

Some of the examples below pertain to me, and others do not. I might not make evident which are which, for simplicity's sake.  

 1. If a person is in a wheelchair (the self-propelled kind), be sure to ask them if they would like a 

     push, before you take hold of the chair and begin to push. One, it is very startling to suddenly

     be moving much faster than you intended, two, you've now essentially taken control of this 

    person and their direction, and three, depending on where their hands are placed at the time, you

    could easily break fingers or hand bones! Also, be careful about bumping our chairs. It happens,

    of course, but I know that I personally experience pain every time that chair is jerked in any way.

 2. Never shove a chair out of your way! You would think this would be self evident, but I once

     had a lady in a grocery store move my chair (with me in it) because she wanted to be where I

     was! Now, most folks may not know it, but as I understand (and feel!), a person's wheelchair

     is considered an extension of themselves, since it is their mode of transportation. If you lay hands

     on the chair, you've essentially laid hands on them, which is assault in anyone's book! That said,

     it's just common courtesy not to shove someone  out of your way, after all, if I'd been standing, I         really doubt this lady would have done that. 

 3. Please, if your children are curious about the chair or any other aspect of our illness, don't yank           them away and tell them not to ask questions! This makes them afraid of us folks! I never want a         child to be afraid of me, for any reason! I'll answer any and all questions they ask, in, hopefully, a       way they can understand. That said, I'm sure not all of us  feel that way, so just ask us first if   it's      okay. But, even if the person isn't comfortable talking, please don't make the children afraid,                try to educate them yourselves, for you never know when someone they know will need a chair!

 4. Sometimes those with chronic illness/disability can become isolated. Many things can cause us not

     to be able to get out and about as often as we'd like. As a result of our often having to bow out of

     things we would like to do, sometimes folks stop asking us to go places. Just because I've had to 

     say no the last 3 times you've asked, please don't just decide that I no longer want to go. It may be

     a pain to you, but that 4th time, I just might be up to it, and will feel left out if not even asked. We

     become isolated enough due to the physical difficulties we face, and we so often feel so alone  due

     to not being able to get out, and to knowing that those who care about us can't really understand 

     what we are going through unless they themselves are dealing with it too. Even if they care for us

     everyday, and know our illness inside and out, they can't know our minds & deep thoughts and            pain.

 5. Other than chronic pain, my personal disability and illness can manifest itself in many different

     ways, often from day to day. One day it may be my body won't respond and I can't get out of bed,

     the next (or same day, later) my vision may be too blurred to even read. My hands may shake, my

     body spasm. I often have trouble swallowing, speaking, understanding. (This can pertain to                    many different illnesses!)  Some take this as "okay what's the problem du jour? "  I feel bad                 enough without feeling belittled because it truly can be 'something different every day'. 

 6. Please, ask us if we need help before you do so. We can be an independent lot, and sometimes

     we need to feel that we can still do things like we used to. Sure, there are times we can't, and we

     need to learn that too, but let us try, okay? And, then if we can't, please don't say "I told you so"

 7. I personally have no problems with questions! Ask me what I deal with, how I manage, if you are         curious. I know not all may feel this way, but ask them how they feel about answering questions,         and go from there. Sometimes, part of our isolation, is that those around us have no clue what we      deal with each day. That said, sometimes family we live with understand all too well and get tired       of it. As a result, we may be reticent to say anything, for fear we will get the reputation of being          "that person", you know, the one always talking and complaining about their health. I personally          have no problem with a friend telling me directly that I'm becoming maudlin and asking me to             change the subject, but that's just me. There are those who have no one to talk to at home, and              desperately need someone to understand.

 8. Unless we've asked, please don't bring us articles about the next big "cure" for our problems, or

     on how we can alleviate the symptoms. Believe me, we've seen them all. Some of us will try any

     and all promised cures etc., and some of us have reconciled ourselves. Also, some of those so

     called cures are dangerous. I've had more than one person show me articles on how bee stings are

     being used for some with my condition, as a help for symptoms. I am highly allergic to bee sting,

     and could die from just one, so, um, no thanks, LOL

 9. Tell us how you are doing. Ask us to pray for you or a loved one. If we can help in no other way,

     we can pray. We want to be included in your joys and pain, it makes us feel more 'normal'. Call,

     write, go out to lunch, and tell us what's happening in your lives. That said, let's not make it a 

     competition. Some folks hesitate to tell me of their own pain because, "It doesn't compare with

     yours!"  Phooey!  If it's your pain, it's your pain, and shouldn't be compared with anyone else's!

     What you feel is what you feel, regardless of what anyone else feels!

10. If you have not seen or heard from us for awhile, give us a call. We might need the connection, or

      we might need help. Sometimes we slip into depression, and that can get dangerous if no one

      checks on us. That said, it is always good to call before showing up at the door. It might be hard

      for some to get to the door in a timely fashion, and you may leave before we can get there!

11.  I have a family member, not close or immediate, but whom I occasionally see out and about.                Invariably, their comment is, "You must not be too sick, you look so well!" This always gets to          me. I know, I should be (and am) glad that they think I look well. After all, how would I feel if              they said, "Whoa, you look like hell!"? No, the problem is not with looking well, it's with the              comment that I must not be too sick. It feels like a negation of my situation, as if I've somehow            made up how ill I am and am just pulling their leg. Now, I am sure that is not their intention, but          that is how it sounds to someone dealing with chronic pain and other issues. You may have no 

       idea that I'm in constant, unrelenting pain, and have just found a way to mask it .

Okay, enough, I've already written more than most folks will stop to read in this busy busy world we live in. And still, there are other things I could add. Perhaps I should just add a new item to each blog I write, LOL, tacking it on to the bottom?  Just kidding. I hope these help and do not hinder! If you have ANY questions about how to handle different situations with the chronically ill/disabled, please ask me in the comments section! I promise to answer as soon as I can, and if I can't answer, I'll try to direct you to someone who can!  Blessings!

I Am Enough

   On September 23, 2014, I attended night one of a two night Mission/Renewal at our church. A priest who had once been our parish priest presented the night for us. It was a wonderful night, filled with insight and the Spirit. The basic gist of the evening was learning to be a good Christian in this world that says we should just care about ourselves.

   As I say, there were many insights and points made during the evening, but one in particular struck me. Father was speaking about having 'enough'. This is a consumer driven society, we always think we need more, what ever that 'more' may be. The basic message was, "If you have a home, clothes, and mode of transportation, you have enough. If you have warm clothes and the only reason you go to bed hungry at night is because you are dieting, you have enough. If you can vote your conscience, and worship the way you wish, you have enough."  After all, how many people in this world do not have enough? I took the other side of that to be, if you have more than enough, you are morally obligated to try to ease the suffering of others with it.

  Thinking of it that way was an eye opener to many of us. To realize that, though we may not be rich, if we have these things, we have enough. To think of all the ones in this world that are literally persecuted because of their faith! To think of the children who go to bed hungry every night, and get up the same way, to face more of the same the next day! I could go on and on.

  However, as I listened to Father, a thought began to creep in. We were talking about having enough, but something, I've no idea now what, made me start to think of being enough. (I now believe it was God speaking to my heart)  It settled in, and the thought began to grow . How often lately had I felt that I wasn't enough?  As my disability has grown, I've begun to feel diminished. I can't do all that I once could, I can't be there for others and my church as much as I once could. I feel I'm not doing enough for my family (both actual, and church), letting them down. I have begun to feel alone, afraid, and just less than.  But, as we got closer to the end of the night, I slowly began to believe that I am enough.  As Father went around the church asking if anyone wanted to say one thing they would take with them that night, I burst into tears as I said just this.

  It may take some time to fully internalize what I came to believe that night. I know now that, as others shared with me later, I'm not alone in feeling this way. But, just as we have enough if we have our basic needs met, we can be enough if we try to "be all that we can be", in the words of a popular advertisement. Perhaps I can't go to all the events at church and other places that I want to, but if I'm forced to stay at home, I can pray about it! Maybe I can't be there in the flesh for all my friends when they are dealing with things, but I can pray about it! Maybe I can't do all the things for my family at home that I used to, but I can try to do those things that I can do to the best of my ability. No, I'm not as strong as I used to be, physically, but, in other ways, I'm stronger! My prayer life is deeper and more vibrant than it once was. I can empathize with others so much more than I once could, because I know what it is to be in pain that won't go away, to not be able to do the things you want to because you are in too much pain, too exhausted, etc., due to illness. I am also more fearless in some ways, because, what's the worse that can happen if I finally get the courage to cantor at Mass? What's the worse that can happen if I give a talk, in front of dozens of people, about fundraising? None of the possibilities compare with reality! 

  So, I now have a new mantra to live up to.  "I Am Enough!"  God made me to be enough! God has given me all I need to be enough. God will be with me to the very end of this life, and waiting for me at the beginning of the next. Until then, God has given me all I need to be the best person I can be in this life, I just have to keep believing it!  Blessings to one and all! 

Education: An End to Fear - Why Students Hate Homework - Extra Credits

What Is Lent To You?

   We Catholics observe Lent every year. It begins with Ash Wednesday (which is on March 5th this year, less than a week away!), and ends during Holy Week, right before Easter. It is a very important observation in our Liturgical calendar, as Easter is considered the most important celebration of the year. Some might argue that Christmas is the most important, but without Easter, and all that Christ did and went through to get to that point, there would be no Catholic Church to observe it! (I do understand that Catholics are not the only Christian's to observe Lent, I'm just writing here from what I know!)
   Lent is typically a time of waiting, of preparation of the soul, for the coming of Christ at Easter. Both Advent (the days before Christmas) and Lent are seen as times of waiting, and the colors for the Mass during both times is purple. However, whereas Advent is in preparation for the birth of our Lord, Lent is in preparation for the fulfillment of His promises as He rises from the dead. Therefore, Lent is a time of reparation, a time to search one's soul, repent one's sins, and prepare a clean heart for Christ to enter.
   Catholics do this in a variety of ways. Some give things up for Lent, things they enjoy (for time immemorial, children have given up sweets for Lent), as a way of denying themselves. Some try to refrain from certain actions as a way to better themselves (i.e. using bad language, drinking too much, etc.) Some try to do more for their fellow man, such as working at soup kitchens, giving more to the poor, etc. Some try to add extra time for their prayer life, both alone and with family. They read Lenten booklets, pray more as a family, work as a family to do 'good works', etc. Some try to do some of all of these things. And of course, we all give up meat on Fridays. However, the rule concerning that was never changed, so, technically, we should be giving up meat on every Friday, not just the ones during Lent.
   All of these endeavors are laudable. They help us "unclutter" our souls, simplify things, make room for more charitableness in our lives. Lent is a time of going within, taking hard looks at our own souls, and seeing if we are truly ready for the coming of Christ. However, while it is a good thing to deny ourselves certain things and attempt to be better people, it doesn't all have to be hardship!
   Family prayer time could actually (and should actually) be an enjoyable thing! One way to do this would be to find a book or booklet designed for families, and use it during Lent. If I may suggest one, Connie Clark recently came out with a brand new one for Lent 2014. It is entitled, "Lent For Families 2014; Real Life Lent; Daily Meditations, Prayers, & Activities."  I have a copy, and though my son is now an adult, I would love to have had it to use when he was younger. Help your children see that while we may deny ourselves, we are looking forward to a wonderful 'reward' in the coming of Christ!
   Try to find ways to make Lent special this year. I usually find a good booklet and use it to journal through Lent. I try to do more, be more involved, but since my health no longer allows me to do as much as I once did, this is one way I can have a more fulfilling Lent. I also spend more time in prayer, especially for those I know that need extra prayers at that time, but for all those I know and care for.
   The point is, Lent is another part of our journey. It should be observed as a time of growth and maturity in our faith, not as a time for sack cloth and ashes (Ash Wednesday not withstanding). What I'm saying is, though it is a time for repentance, acknowledgement of our sins, trying to cleanse our souls, it doesn't have to be a time we feel the need to 'get through', 'endure', etc. It can be a joyful time of getting to know our own souls a bit better, as well as our families and loved ones. We can also rejoice in it that we are striving to grow closer to God. And, while we are at  it, shouldn't we be doing this all year long anyway? Why just the 40 days of Lent? We should be striving toward bettering ourselves, being better, kinder, gentler, more Christ-like people all year long!  Lent is just a reminder of this!
   I invite your comments! Please let me know what you think, and may you all be blessed!